Dating With A Chronic Illness: The 7 People You Will Meet

Dating with a chronic illness can complicate things. Here are the 7 types of people I’ve run into:

1. The One Who Ignores Your Illness

A lot of people have no idea how to interact with someone with a disability. While some people may attack the issues you face head on, these people avoid the topic at all costs. They rarely ask you how you are feeling, avoid topics of doctor’s appointments, and generally clam up when the topic turns to anything health related.

In my experience, these people do actually care if you are okay, but really don’t know how to go about talking about it. Unfortunately, not discussing a huge struggle in your life with your partner just doesn’t work. Education leads to understanding. If someone isn’t willing to talk about your illness it will be more difficult for them to understand problems that pop up. They lack the knowledge to understand why their sick partner had to cancel at the last minute, why they can’t eat the chocolates they gave them, or why those surprise concert tickets pose a problem.

2. The One Who Pities You

I love it when a partner rubs my head when I have a migraine, or is sympathetic to my venting. This sympathy can cross over to pity which gets old fast. Having a chronic illness is definitely a struggle but I don’t want to be constantly reminded “how strong I am” or asked “how I don’t give up.”  I want to be an equal in my relationships, and being constantly babied takes away from that.

3. The Overly Helpful One

Yes, someone can be overly helpful. These partners go above and beyond when trying to help you manage your illness. They even help you with things you don’t ask for, and for a while everything is much easier. The problem with the overly helpful partner is that they almost always burn out. They put helping you with your illness over their own needs. And when they burn out you are the one who gets burned. Not addressing their personal needs leads to them resenting the person they are trying to help.

These breakups are often very abrupt and sudden. One day they are driving you to the hospital and sitting up with you all night and the next day they leave you alone in the hospital to go to a party saying it is all too hard. All of a sudden all the things they did for you (that you never asked for) are all your fault and you aren’t thankful enough for everything they do. Finding someone who can be honest about their needs and not stretching themselves too thin is extremely important.

4. The Expert

Calling this partner the expert is wholly inaccurate and really just my way of ridiculing them. People with chronic illnesses will run into “experts” on their condition all the time. They suggest ridiculous things you have already been checked for or try to tell you about an illness you have had for years and understand very well. I’ve even dated people who get upset with me for not following their suggestions, “have you been checked for gluten sensitivity again yet?” They think the only reason you aren’t cured is because you haven’t had their ideas yet. These people also see not following their ridiculous suggestions as not trying hard enough.

5. The One Who Can’t Stop Asking If You Are Better Yet

Sometimes you can explain your illness a hundred times, define chronic repeatedly, and do your best to educate your partner and they will just never get it.  They will say things like “oh, you’re still sick” or “wow you still aren’t feeling better” or “when you are healthy we can go out.” I have a chronic illness! Chronic means long term; I am always sick!  They just don’t get it no matter what you do.

6. The One Who Can’t Handle It

This is the most common person I run into while dating and I must say it has left me frustrated. Sometimes my chronic illness comes up naturally in conversation, and other times I have to modify plans and it will come up. It is perfectly common to never hear from them again after this. For a while I thought I was paranoid and that it has nothing to do with my illness or that people just thought I was being flaky. However, I have had a few people outright tell me they aren’t okay with dating someone with a chronic illness.

For example, on one online date, within fifteen minutes, I had my date say “But she had Crohn’s disease and I am sure as hell not going to put up with that bullshit.” I walked away. What an insensitive jerk.

7. The One Who Supports You

I’ve found finding people who support you through your illness to be incredibly rare and even more so in dating. The best partners treat the chronic illness as something you are fighting together, not a negative personality trait that is your fault. Remember that you always deserve someone who supports you!

FOMO: 8 Ways to Stay Social with POTS

The decline in quality of life we experience with POTS is comparable to someone with congestive heart failure. So it isn’t surprising that our social lives, frankly, suck. Finding friends that understand when you have to cancel is incredibly difficult. Finding friends who understand to the point where they don’t insist on activities that include standing, alcohol, or being out in the heat seems to be impossible.

Last Monday I tried to go out with friends and ended up puking in the bathroom and sleeping in the car. Then at a small party this weekend I was feeling terrible and had to keep going outside so as to not throw up. I fainted in the hallway, was in a ton of pain, and just all around felt awful. When I came back my partner made a comment on how I was missing out on everything. Well that comment hit me really hard. It really does feel that way.

I try and go out with friends and about a third of the time I feel too terrible to enjoy myself. Almost every single time I am around people I feel isolated by the pain I’m in. I do miss out on things with my friends, and most of my friends have left me behind altogether. The worst part is that I am not alone, and that most of us with POTS feel this way. In fact, 98% of us felt like POTS gets in the way of a social life.

Does POTS prevent you from socializing as much as you’d like?

Yes	98%
No	2%

Source

So what is there to be done? Humans are social creatures and not being able to socialize is a huge detractor from quality of life. Unfortunately, there is no magic solution, but there are things that may help:

1. Educate your friends

Unfortunately this only works if you have really awesome friends. A lot of time my attempts to educate fall on deaf ears. Some of the resources I have found most helpful are the spoon theory or this condensed and easy to understand information from Dysautonomia International. Being clear about activities you can and can’t do is essential. People aren’t going to make the connection that if you are heat intolerant you can’t go to an amusement park in the summer (even though it seems obvious to us), or that if over-stimulation messes with your POTS a 3D movie is really going to make your symptom worse. Being clear about what you can and can’t do helps a lot with understanding.

2. Push yourself, but not too hard

About two thirds of the time when I push myself to do something social it ends up being fantastic and I don’t regret my choice. I may not feel well, but being around friends keeps my mind off of it and finally getting to feel slightly normal. It really makes a world of difference in my mood and ability to deal with my illness. That is why I say push yourself, but not too much. We all know what happens when you use too many spoons.

Every single time I want to go out it involves “pushing myself.” Even getting dressed and ready is a huge accomplishment. I don’t think people around me realize that, but i wish they did. You are the only one who can gauge what you are up to doing.

3. Join online support groups

These have been so helpful to me and lots of other chronically ill people. Just go to Facebook and search for your condition. Be aware that some groups may not be private and you may want to make an alternative account.

4. Join in-person support groups

There are a few of these scattered throughout the world. It definitely helps if you live in a big city. If you live in Denver or Colorado message me on Facebook and I will add you to our group. Finding just one other person to chat with occasionally can be really helpful!

5. Try Meetup to find people who get it

Meetup is great for finding general chronic illness groups. People in the group may not have POTS, but they know what it is like to live with similar problems.

6. Suggest Activities that Work for you

The default with my friends is to go out to bars when we want to hang out, but sometimes that is too difficult. Standing, driving, drinking, and (for some reason) bar-stools are not things I do well with all the time. A lot of times your friends may be completely happy to binge watch Netflix or have a movie night in and all you have to do is ask. Suggesting things you can still do instead of cancelling is a great way to stay social. Sometimes it is hard to ask because it feels like you are expecting others to accommodate you, but if you have good friends they will be happy to spend time with you no matter what you are doing.

7. Don’t Worry About Being “the sick person”

This is a difficult one and I really need to work on taking my own advice. You may have read my post about being temporarily paralyzed after an injection. Well that weekend I had a social event that I really wanted to make, but couldn’t walk. I bit the bullet and went out in a wheelchair. Using a wheelchair when you only need it is so confusing to people for some reason, but I recommend it wholeheartedly. Using a wheelchair makes going out so much easier because it takes away from the standing and walking usually involved. I got a lot of questions, but I don’t mind those from friends. People were surprisingly eager to help. I didn’t feel like the “sick girl” either. My friends and acquaintances seemed to talk to me as a person, and not talk down to me as someone in a wheelchair which I was worried about. Plus I got to wear heels without falling on my face- added bonus.

Fear of fainting is another barrier to going out. Fainting in public is not fun. People assume you are drunk, freak out and call and ambulance, give you terrible and unnecessary CPR (and sometimes break bones), or literally step over your unconscious body. So it is understandable that 44% of have a fear of fainting in public that prevents us from going out. My recommendation is to carry these cards, wear a medical bracelet, make sure any friends around you know what to do, and not to go on first dates or hang out with complete strangers unless you feel great. Always remember you can turn down an ambulance ride; they will try to convince you to go because they won’t understand POTS. That is why it is helpful to have a friend who knows about your condition and will stand strong in not letting them take you to the hospital.

POTS-related barriers to socializing

Low energy	87%
Brain fog	60%
Unable to stand	56%
Physical pain	54%
Fear of fainting in public	44%
Unable to drive	38%
Fear of needing bathroom too often	26%
Unable to shower or groom properly	25%
Unable to drink alcohol	14%

Source

8. Be Honest About your Needs

I should not have stayed at the party this weekend. It ended up with me feeling ever worse and I wish I hadn’t been stubborn. If you feel awful, rest. The fear of missing out (FOMO) can be a hard thing to deal with, but it is better than making all your symptoms flair. My friends joke that everything crazy happens right after I fall asleep, missing out sucks, but what else can I do but laugh at it?

It Is Okay to Feel Like Giving Up: A Letter to Those Who Support A Chronically Ill Loved One

Dear Supporters of a Person Who Is Chronically Ill,

Today I want to give up. It happens every once in a while. Chronic pain is a fight you never get breaks from. It is all day every day, and lately for me it has been all night every night. Pain and lack of sleep have left me feeling incredibly discouraged. Sometimes I feel as if being in pain for this long warps my thoughts. All I want is a break from the pain. It is easy to want to give up when you can’t even get a break from pain while sleeping.

Additionally, I don’t feel like I can talk to anyone who usually supports me. I don’t feel like I am allowed to do anything than fight this every second of every day. I don’t feel like I am allowed to feel anything other than hope and inspiration. I don’t feel like I am allowed to be this discouraged.

When you feel like giving up feeling isolated is one of the worst things you can add to the mix. I know I won’t give up. I know that I will push through because I always do. It would be really nice to not feel so alone in this feeling right now.

In the past, as I’ve talked to people around me about these feelings I have noticed a pattern. They listen long enough to get scared, shame me for feeling this way, and change the subject. I understand that is an uncomfortable subject. I really do, but when you respond in this manner the next time I feel this way I won’t feel like they can talk to you. That is where I sit today.

So I am here to tell you what I desperately wish someone would have told me a long time ago: there is nothing wrong with feeling like you want to give up. The important thing is that you don’t give up.

Do not shame us for feeling this way.

So many of us have to fight so hard every day- against pain, loss of friends, loss of social life, and loss of our healthy self. It is okay to feel tired from this battle. When you shame your loved ones for feeling this way you guarantee that they will not talk to you the next time they feel this way. That is the very worst time to feel alone.

You can remain supportive and positive without shaming them for feeling this way. If you do this then your loved one is more likely to seek out you to talk to rather than some terrible alternatives.

Don’t see this feeling as weakness.

Wishing you could give up isn’t a moment of weakness; it is expected when you are fighting an uphill battle against your own body.

Listen.

A lot of the time we aren’t looking for a solution. We just want support- someone to talk to. You don’t have to know the perfect thing to say. Sometimes you don’t have to say anything at all. Sometimes a hug or shoulder to cry one is the best thing you can do.

Let us feel the full extent of our feelings.

Crying, screaming into a pillow, and cursing out your illness are all things we need to do sometimes. Let us feel all our feelings without judgement.

Get frustrated at the illness, not your loved one.

Dealing with chronic illness can be frustrating to the patient and those around us. You don’t have to be a saint and never get frustrated. Instead, direct the anger at the illness and not the patient. When they come to you frustrated you will be able to support them better and relate more to their struggle. When you tackle the problem together and see it as an obstacle to work through instead of a problem with your loved one you are much better at supporting others.

Because you and your loved one are fighting the same battle (in obviously very different ways), you are often the one best equipped to understand and support. You probably have similar frustrations with your loved one’s illness. Use this to relate and empathize, but do not make their struggles about you.

Seek help when necessary.

It is not your responsibility or your fault your loved one feels this way. You aren’t expected to support us alone. Sometimes you will need help and that is okay.

If these feelings in your loved one are ongoing they might need therapy. Don’t demand they go. Suggest it and tell them how worried you are about them, how much you care about them, and that you want to continue to support them but you can’t do it on your own.

An Introduction to the Hypermobility Type of Ehler’s Danlos

Ehler’s Danlos is a group of inheritable connective tissue disorders related to the formation of collagen. EDS was named by two physicians, Edvards Ehlers and Henri-Alexandre Danlos, in the 1900’s. Hypermobile Ehler’s Danlos (hEDS) is the least severe type of Ehler’s Danlos, but it can still be a debilitating and cause a lot of serious problems. HEDS used to be referred to as Ehler’s Danlos III or type 3, but that terminology is being phased out. Most of the problems that arise from hEDS are skeletomuscular in nature, but because collagen is incredibly important throughout the body other serious problems may arise.

Collagen is a connective tissue that acts as the “glue” keeping our bodies together. Genetic alteration of EDS at the molecular level also leads to weakened defective connective tissue within the hEDS.

Hypermobile Ehler’s Danlos ranges in how it affects people. Sometimes it can cause small problems or it can be debilitating and completely disabling. HEDS is an invisible illness; you usually cannot tell someone has hEDS simply by looking at them.

Prevalence
HEDS causes more problems in women because they are typically already more flexible than men. Female hormones may also worsen joint laxity. Between 1 in 5,000 and 1 in 20,000 people have hEDS and experts think that it is largely under-diagnosed. hEDS may be the most prevalent inheritable connective tissue disorder.

Diagnosis
Unlike other types of Ehler’s Danlos, there is not yet a genetic test that can effectively diagnose Ehler’s Danlos III. Usually, the Beighton score is used along with a family and patient history to diagnose hEDS. Anything above a five out of nine on the scale is usually considered a positive result. Minor Diagnostic Criteria, as follows, are also important in the diagnosis of hEDS.

“Minor Diagnostic Criteria for the Hypermobility Type of EDS^[1]

• Family history of similar features without significant skin or soft tissue fragility in a pattern consistent with autosomal dominant inheritance
• Recurrent joint dislocations or subluxations
• Chronic joint or limb pain
• Easy bruising
• Functional bowel disorders (functional gastritis, irritable bowel syndrome)
• Neurally mediated hypotension or postural orthostatic tachycardia
• High, narrow palate
• Dental crowding “

Before seeing a geneticist, Classical EDS and hEDS may be hard to differentiate. More temperate cases of classical EDS may be misdiagnosed as hEDS initially. Because the two conditions have different common complications receiving a correct diagnosis is crucial for treatment.

Genetics

It is generally agreed upon that hEDS is passed on in an autosomal dominant manner. This means that the passing of hEDS is not linked to one gender or the other and that only one parent must have hEDS for their children to as well. It also means that those with hEDS have a 50% of passing it on to their children.

People with hEDS almost always have one parent with EDS as well. In some cases, Ehler’s Danlos can be well-managed in one generation and a disaster in the next. For example, my maternal grandmother and mother both get a high score on the Beighton test and meet the diagnostic criteria for hEDS but have never been diagnosed with hEDS.

In more rare cases a de novo mutation (basically a brand new mutation) may arise; patients may have hEDS without biological ancestor’s having the condition. Some cases of hEDS have had a genetic factor linked to their condition, TNXB, but not all patients with hEDS have “haploinsufficiency of tenascin-X (encoded by TNXB) associated with EDS.”^[2]

The Ehler’s Danlos Network claims that Ehler’s Danlos can also be passed on in an autosomal recessive pattern. It is also suggested that carriers of this autosomal recessive hEDS may have symptoms of hEDS but without “skin hyperextensibility, easy bruising, or other hematologic manifestations.” ^[3]

The genetics behind EDS can be complicated, but usually hEDS is passed along in an autosomal dominant fashion with these few exceptions. When these exceptions happen we may see hEDS without a family history or some strange cases of recessive carriers having symptoms.

Symptoms
Psychological

• Anxiety and depression are common in hEDS and are exacerbated by poor sleep and pain.

Neurological

• Migraines are prevalent with hEDS patients.
• There seems to be a higher occurrence of terrible vision in hEDS. HEDS sufferers are more likely to have an eye prescription of worse than -6.0.
• Postural Orthostatic Tachycardia Syndrome (POTS) is a type of Dysautonomia (dysfunction of the autonomic nervous system) commonly seen in hEDS sufferers. There is speculation that hEDS is one of the important causes of POTS.
• Inner ear problems in hEDS patients lead to balance problems and potential hearing problems.
• Neuropathic pain, pain caused by damaged nerve fibers, also occurs in hEDS patients.

Skeletomuscular

• HEDS patients routinely suffer through subluxations and dislocations. These joints that “pop out of place” may be large joints of small joints.
• Tendonitis and bursitis are also common in hEDS.
• Degenerative joint disease (DJD) is more likely to occur at a younger age in hEDS.
• Temporomandibular joint disorders (TMJ) are also more likely to occur.
• Iliotibial band syndrome or “snapping hip syndrome” is commonplace in hEDS patients.
• Osteoporosis, especially at a younger age than expected, is also a frequent manifestation of hEDS.
• HEDS patients are more likely to walk slowly and to have a shorter gait than their peers due to joint pain and problems.

Gastrointestinal

• Bowel and digestive problems are often seen in Ehler’s Danlos. A few prevalent comorbid (conditions occurring together) conditions are IBS, gastroparesis, acid reflux.

Dermatological

• HEDS patients often have veiny skin that is velvety, stretchy, thin, and soft without moisturizer.
• Slowed healing and scarring is also often seen with hEDS.
• HEDS patients are more likely to have molluscoid pseudotumors, fleshy lesions associated with scars.

General

• Ehler’s Danlos patients are at a higher risk of prolapse, especially uterine prolapse, and in general.
• Dental crowding and periodontal disease are common in hEDS patients.
• Sleep impairment, usually caused by joint pain, is a common symptom of hEDS.
• Hernias are more likely to occur in hEDS populations.

Hematological & Cardiovascular

• Easy bruising or bruising with no obvious cause is common in Ehler’s Danlos.
• Aneurysms are more frequent in EDS populations compared to the general population.
• Hematological manifestations of hEDS mimic von Willebrand disease and can lead to hypocoagulability (blood that takes longer to clot).
• Raynaud syndrome and acrocyanosis, the fingers, face, or toes turning blue or white due to poor blood flow, is accepted as a usual occurrence.
• Mitral Valve Prolapse (MVP) is more common in hEDS patients.
• Aortic dilation is also commonly seen in hEDS patients.

Treatment
To be frank, I find treatment options for hEDS pathetic. The best options we have are physical therapy and low-impact exercises such as swimming or pilates. However, there are very few physical therapists who actually know of hEDS and can help without worsening symptoms. Many physical therapists incorporate stretching, some of which is a terrible idea if you have hEDS. It is important to have a physical therapist who won’t make you worse. There is a book for physical therapists, but the tiny thing is $70- inaccessible for many people bombarded by medical bills.

Managing pain is one of the primary goals in treating hEDS. However, pain treatment is controversial. Experts and patients argue over the effectiveness and safety of using opiates, marijuana, and even anti- inflammatory medicine for long-term use in hEDS. More research needs to be done on what helps hEDS patients most.

Mobility assistance devices and braces can also help some patients. Everyone knows about ankle, wrist, and knee braces. With hEDS, you learn about the strange braces and splints- like ring splints for finger joints or hip braces. These devices are incredibly helpful for many but incredibly expensive. A single ring splint for a single joint on the fingers averages $50 and thumb splints can be hundreds of dollars.

Occupational therapists are sometimes recommended for hEDS. They can help teach how to conserve energy, fight fatigue, and think of solutions for problems caused by your chronic illness. Even with treatment many hEDS patients have trouble working. Therapy is also suggested to learn how to live with and deal with this condition and the depression that often accompanies chronic pain.

Prognosis
It is common for people to degenerate as they get older; aches and pains get worse with passing years. The good news is that hEDS patient’s joints get less loose as they age. The bad news is that in every other way you get worse with age with hEDS. HEDS is a lifelong disease.

Arthritis and degenerative joint disease are seen much earlier in life and, therefore, are given the opportunity to get much much worse. For example, I was diagnosed with DJD in my hip at 18; at 24 my DJD is even worse. I’ve been told to expect it to become harder to manage as I age.

All the literature suggests that hEDS does not affect life span. However, a life-threatening complication, aneurysms, are more commonly found in hEDS than the population. I am not sure what to make of this contradicting evidence so interpret its meaning as you like.

Quality of Life & My Experience
If you have read the symptoms for this condition it may not take a detective to figure out that hEDS can lead to a worsened quality of life. Joint pain is the most common complaint among hEDS sufferers. Pain is severe enough to hugely lessen our quality of life. Constant pain in multiple joints, dislocations, and easy injury is exhausting to cope through.

My experience with hEDS has been terrible and incredibly painful. In the past 72 hours I have dislocated/ subluxated/ hurt somehow my left hip, my right shoulder, my right thumb, my right wrist, and my left ankle. Popping joints in and out leads to a lot of inflammation and pain, but I have regular pain even on top of those joints that won’t stay in place. Discs in my lower back, SI joint problems, and a constant rib pain also plague me daily. The only time the pain recedes is when I swim- which is hard to do when your body is literally falling apart. That long list of problems is common with other hEDS sufferers. Collagen is widespread so our problems are as well.

Many others with hEDS have it even worse than I do. Some people are unable to work in any way and are completely disabled. HEDS has effectively hit the pause button on their life. Because hEDS isn’t common we don’t get much understanding or really effort from medical professionals.

Since I was diagnosed three years ago I have watched about three dozen people in my various support groups commit suicide. No one would take their severe pain seriously and they couldn’t handle it anymore. HEDS pain needs to be recognized, acknowledged, and treated effectively. Whichever side of the marijuana and opiate debate (whether they should be used to treat hEDS pain) you are on, it is important to at the very least acknowledge what these people are struggling through and how their quality of life is affected.

I contemplated whether I should add this paragraph because it is very personal. However, I think it will enhance understanding of how much hEDS has touched all aspects of my life and does so to many others. It is common for women with hEDS to have complications with pregnancy, fear to passing on their bad genes and suffering, or simply cannot have children due to their health. For me, the genetic component of hEDS is a primary reason I made the decision never to have biological children. I do not like 50% odds and have no way of knowing if a biological child would have a severe case or not. I don’t want to pass pain on; there is enough suffering in the world. It was not an easy decision, but a tough one that hEDS women are forced to make.

Learn More
Here are some great resources on hEDS:
http://www.ncbi.nlm.nih.gov/books/NBK1279/
http://www.ednf.org/hypermobility-type
I recommend using EDNF resources only on this page. Some of their other information is potentially harmful to patients.
My book will also have an extended section of EDS.
[1] http://www.ehlersdanlosnetwork.org/hypermobility.html
[2] http://www.ncbi.nlm.nih.gov/pubmed/23284009

[3] http://www.ncbi.nlm.nih.gov/books/NBK1279/

Update: Because I’m Special Like That

Like a lot of people with Ehler’s Danlos III, I have back problems and hip problems. In the past, I have received epidurals for the pain and the injections have been lifesavers.  This time my body decided to be uncooperative.

The first injection went fine, but as they began the second injection Cerebral Spinal Fluid began to leak. They stopped the procedure to make sure it would stop. It did so I went back into the operating room a second time. When I came to I could feel nothing from the waist down and couldn’t move anything from the waist down either. Now I am not talking about numbness or weakness. I had full on temporary paralysis. It was such a strange feeling!

Looking awesome in my funny hat and gown.

My doctor wasn’t too worried and assured me it wouldn’t be permanent. She said out of he two thousand procedures she has done this has only happened once before. Because I am special like that.

Over the next few hours I began to regain feeling in my hips, legs, and finally toes. The saddest part of the whole experience is that when I could feel nothing from the waist down was the least pain I’ve been in for the past six years. It was a strange thing to enjoy (only because I knew it was temporary).

Now the recovery is extremely painful and slow. I can only help some of it helped. We will see.

And Then She Told Me I Have Cancer

Having Cancer is News to Me

Last week I was diagnosed with cancer by an ultrasound technician before the test even began. I sat down and she sais, “so we are looking at the state of your thyroid cancer.” As far as I knew I was just having a thyroid nodule checked. I was nervous, but her comment terrified me. I confirmed with her that the order did say I had cancer. Did the doctors know something I don’t?

I then proceeded to ask the name of this doctor who said I had cancer. Somehow, the order was from a doctor I’ve never even seen. A doctor I hadn’t even been to yet said I had cancer. My primary doctor is the one who scheduled the test so I was very confused. Maybe this new doctor didn’t care enough to enter the correct code for the technician. I can’t even imagine what happened to make that mistake. As a result, my weekend was stressful. I had to wait four agonizing days before the doctor finally called me back.

At least for now, they have determined that the tumor doesn’t need immediate attention. I don’t understand because it has doubled in size in the past year. I also have mysterious thyroid blood test results. For some reason, I don’t feel relieved yet. Maybe it is taking a while to sink in because I was trying to get used to the idea that I do have cancer in case the ultrasound technician was correct.

I am confused and frustrated over this situation. Patients shouldn’t have to deal with a fake cancer diagnosis. Telling someone they have cancer should never come so lightly! And you definitely shouldn’t have to hear it from an ultrasound technician.

I try to be understanding of people just making mistakes. However, these sort of mistakes happen all the time to me. I’ve been misdiagnosed a few dozen times. In fact, this isn’t even my first time being told I have cancer. The first time I was told I had cancer was by a Gastroenterologist. He diagnosed me without even doing tests. As someone who struggled to get my diagnosis, I am usually all for getting diagnosed. But only is if it the correct one! Incorrect diagnoses are stressful and harmful to patients.

The first time I was misdiagnosed with cancer, I was referred me to an oncologist and they did many painful tests and put me through a lot of stress before determining I didn’t actually have cancer. For months, I thought I had cancer because my doctor didn’t care enough to get all the facts. That stress takes a toll on your mental state.

Too Many Rules

I also had bronchitis/pleurisy last week. I was coughing, hadn’t slept in three days, and was in terrible pain. It is now taking three weeks to get into a Pain Specialist for an appointment. So I called my doctor. She called me in an antibiotic and cough syrup with codeine to the pharmacy to help me sleep. I was excited to finally get sleep and feel a little better.

Cough syrup with codeine is monitored closely under the law. A hard copy of the prescription is required to refill it. So obviously the fax from my doctor didn’t work. I called my doctor at 4:30 PM and they were already closed! So just because of ridiculous rules and regulations I had four pain filled and sleepless nights in a row instead of just three miserable nights.

I understand that many of the rules and regulations in the medical system exist for a reason. However, people who are chronically ill have to deal with all the inconveniences created by rules daily. While I am sure that requiring hard copies may lessen narcotic abuse, but it makes it so difficult for chronically ill patients to get the medication they need. When these problems arise, doctor’s offices take hours if not days to get back to you. The rules and regulations may not stop, but how medical professionals can change to make their patient’s lives easier.

When problems do arise, doctor’s offices take hours, if not days, to get back to you. The rules and regulations may not stop, but medical professionals can change to make their patient’s lives easier.

We Need Change

The medical profession exists to help people. However, when things go wrong the medical system can ruin your day, week, or life. Even small mistakes, like the failure in communication between professionals I experienced, can really make the patient’s experience worse. Dealing with an illness is already a trying time and incorrect information can affect people’s quality of life. Shouldn’t medical professionals be working to make their patient’s quality of life?

It needs to be easier to contact doctors for questions; it needs to be easier to refill a prescription. There has to be a better way for medical professionals to communicate with each other.

Most importantly, we need to value medical professionals who do care about their patients. There is so much focus is on competition and learning in medical school that by the time those students are doctors, they have a hard time seeing them as humans. When intelligence, competition, and apathy are encouraged in medical students is it really any surprise that doctors don’t value their patient’s quality of life.

My largest complaint with the medical profession is that I am treated like a number. I have bounced around hundreds of doctors and am constantly bombarded with tests, but rarely does a doctor treat me like a human being. Treating patients like humans instead of numbers will solve many problems the medical system has. I know a doctor who cared about patients as people wouldn’t accidentally diagnose someone with cancer.

9 Ways to Be Supportive When You Don’t Understand

There are many experiences common to every human. Most of us will go through these, so we can easily relate and empathize. Nearly everyone is affected by the common cold. Therefore, when someone says they have a cold it is easier be understanding and supportive.  Memories of soup, towers of tissues, and feeling miserable immediately come to mind. We know how to support and help each other through a cold because we can remember what we needed. But what happens when you have no idea what a loved one is going through? How do you support them?

1. Realize you don’t have to understand to lend support. As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

2. Don’t compare experiences, but do relate to feelings. Whatever your loved one is going through, you have at least some experience you can look at and relate it to. We have all felt frustration, despair, hatred, and pain. For example, if you want to relate to someone who is chronically ill look at what you felt when you were sick. You likely felt pain and frustration, just to a different degree. Therefore, you have the tools you need to empathize with them. Just think, how would those feelings change when sick much longer? What else would you feel? What would you need in terms of support?

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

3. Seek to understand and learn. When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up ”

When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up “what it is like to lose a parent” or “what it is like to live with a chronic illness“. Reading these will help you to understand what your loved one is going through. If you still have questions, approaching your loved one and saying “I don’t understand what you are going through but I want to support you” can be enough! This gives your loved one an opportunity to explain what they are going through or, if they do not wish to talk, they will at least know you really care and feel your support.

4. Never judge. The fastest way to make someone feel unsupported is to judge them. Never judge how someone deals with something you have never dealt with. Even if you have dealt with it, avoiding being judgmental is a great practice. For example, you should not say “it has been six months, shouldn’t you be getting back to normal?” Instead offer support and say, “I know these past six months have been hard on you; is there anything you would like to talk about?” Try to understand and support first, judge later (or never).

5. Offer more than your prayers. Prayer is the most common support offered to loved ones going through a hard time. Letting someone know you are thinking about them is great, but what are you really doing for them? Even if you believe in the power of prayer, you telling them you are praying does little for them as far as feeling supported. Letting them know that you are there to listen, cooking them a meal, or cleaning their place is much better. If you want to let someone know you are there for them, do something! Actions speak louder than words. These helping actions will lead to your loved one feeling much more supported than they would with a prayer.

6. Reach out. Don’t assume they will ask for support. Asking for help is not my strong suit. Asking for help isn’t easy for a lot of people. When people are going through a hard time it may be even more difficult. Vague offers for help with “anything you need” begin to feel empty and contrived. So if you really want to help and support someone ask, specifically, what you can do. Reach out to them whenever you think of them or wonder if they need anything. Even if they don’t need help, they will feel much more supported.

7. Suggest specific ways in which you may help. Suggesting specific ways in which you may help will make your loved one feel even more supported. Even if you aren’t aware of exactly what they need, offering concrete ways in which you want to help shows your support. Suggesting tasks also gives your loved one an idea of what you are willing to do and gives them an idea of what they can ask for comfortably. When I need help I ask people who have offered some specific help in the past. I assume people who say “if you ever need anything just call,” are simply being polite.

8. Listen and empathize; hold the advice. If you have no idea about what going through a situation entails, please don’t give advice on it. I can’t tell you how many people have given me unwarranted medical advice because I have a chronic illness. It isn’t being supportive. When you give advice on something you know nothing about you minimize what your loved one is going through. I have spent the past six years bouncing around the medical system, confusing doctors. My complicated medical problems are not going to be resolved by an ignorant jerk with no medical background who is convinced I just need to cut out gluten.

This of course only applies when you aren’t asked for advice. If you have been asked, give your advice with as little judgment as possible.

9. Don’t pull away just because you don’t understand. Just because it is hard to be there and support someone through a hard time doesn’t mean you should give up. Even without similar experiences you can enrich their lives through supporting them through this hard time. Seek understanding even if it isn’t the easiest thing. They need your support especially now. Even if someone doesn’t ask explicitly for your help and support, they may really need it.

It is possible to support someone through something you don’t understand. Ask questions and try to understand what they are going through the best way you can. Offer specific suggestions for how to help them, and don’t offer unwarranted advice. Just listen and love. Good luck!

Cake is Infuriating: Chronic Pain in the Movies

For those of you who don’t know what I’m talking about, Cake is a movie with a Jennifer Anniston about a woman in chronic pain. When my partner first downloaded the film I was really excited to watch it. Chronic pain is a real struggle for so many people. Our story will finally be told!

I got my hopes up, but Cake was absolutely infuriating. They had such a great opportunity to share our story and fell entirely short. Not only is Cake a terrible representation of what it is like to live with chronic pain, the film seems to go out of its way to make us look bad. This is a common issue. People with chronic pain are commonly treated like criminals for being in pain. Our entire struggle is diminished as “drug seeking” and society basically shames us for the pain we have no control over. Cake is making these misconceptions worse.

Chronic pain does not equal addiction!

Claire, the main character of the film, falls short in so many ways. Claire is an abrasive addict. She is obviously addicted to opiates. She likely is actually in severe pain, but she is not responding in a healthy manner. There are people who take opiates for chronic pain and get help the correct way. Claire does not. She lies to her doctor to get medication. She drives to Mexico to get medication. She steals from her dead acquaintance to get medication. She drinks in excess while on medication. She takes an incorrect dose of her medication. She even overdoses as a response to stress!

For these reasons, Claire is an ideal character to represent addiction. The problem is that, for many, she represents someone with chronic pain. She fails us.

Pain isn’t Passing

In Cake, Claire’s pain begins as a part of a car accident in which she lost her son. Claire is in physical rehabilitation to make improvements over her condition. We are shown an aqua therapy session in which Claire gives up quickly due to pain and the therapist complains about her lack of improvement. Eventually, when Claire begins to try harder; things begin to magically go her way. This upsets me greatly. The most frustrating misunderstandings people with chronic pain endure are perpetuated by this horrible movie.

For example, chronic pain is not on a timer. Chronic pain isn’t usually pain from an accident that should continue to improve in time. For a lot of us our problems will get worse with age or stay the same. That “you aren’t better yet?” mentality is so frustrating! Explaining that this is the state of your health and it isn’t going away anytime soon is incredibly taxing.

Hard Work… Impossible Work

You just need to “work harder and you will be better!” This mentality, encouraged by Cake, is also harming those of us with chronic pain. In my condition, (Ehler’s Danlos III) hard work and physical therapy are often required to heal from injuries. However, no amount of determination or hard work is ever going to magically fix the collagen in my joints. I will continue to have problems. My control over my recovery is limited by my underlying condition. Just like many other chronic pain sufferers.

At one point in the movie Claire decides she is done with drugs. She even dramatically tears out her IV. I seriously can’t roll my eyes at this enough. In Cake, Claire’s determination was enough to stop the meds and deal with her pain drug-free! This is far from reality.

For me, pain meds are the last thing I try. If I am on pain medication for an extended time it is because I would not be able to function, survive, and/or live in the amount of pain I am in off of medication. There are too many side effects for me to be on them unless it’s a necessity. Opiates aren’t some nice crutch you start and stop on a whim!

You would never praise a diabetic for suddenly forgoing insulin. If Claire needed the amount of opiates she was consuming, suddenly stopping is unrealistic. Stopping opiates suddenly after an extended amount of time is simply a bad idea. That should have been a decision she made with her doctor. Cake continues this belief that opiates are only for those who aren’t mentally strong enough to handle pain. Taking medication for severe chronic pain is not a sign of weakness. Stop stigmatizing treatment for chronic pain!

Chronic Pain and Suicide

The single thing that I appreciated was that Cake approached topics of depression and suicide ideation. Physical pain can have a huge impact on mental health. It is under-addressed that a lot of people in chronic, severe pain think about suicide and self-harm. It is actually quite natural for these thoughts to come up in chronic pain patients.

What about it wouldn’t be natural? If you were in pain constantly would you too not wonder about escape? Patients who feel this way should be offered support and therapy; under no circumstances should someone in severe long-term pain be shamed. Whether patients disclose depression, suicide ideation, worries of dependency, or ask for a pain medicine there is no reason they should ever be treated as a criminal. Any open and honest communication should be encouraged.

If the pain is severe enough that suicidal thoughts are occurring then coping mechanisms need to be enhanced. Often chronic pain patients do not ask for help with these coping strategies despite medical professionals being equipped to help. Both the act of admitting depression or suicidal thoughts as well as requesting additional pain relief are extremely stigmatized. Therefore, patients aren’t talking to their doctor and getting the help they need before suicide becomes the only viable option left. This is a topic that needs to be talked about more and I appreciate Cake addressing it. Addressing depression and suicide ideation really is the only thing that movie did correctly!

I also believe that it is necessary for patients to be able to be honest about worries of dependency, tolerance, and addiction to opiates. By criminalizing opiate addiction, we have made it so that these patients, like Claire, cannot get the help they need. If Claire wasn’t worried about being judged or treated like a criminal she may have been able to get the treatment she needed for her opiate addiction.

Cake is Just Wrong

This movie genuinely had me in tears, and definitely not because it was a truly moving. So many people who were in my life have treated me like I’m Claire. They treated me like a drug addict for being in pain. This is how a big part of the world sees us. It already is terrible to be in pain every waking moment. Those around you seeing you in pain and still treating you like a drug addict due to the stigma behind opiates is even worse. I know for a fact that a portion of my family would rather see me screaming, crying, and writhing on the floor in pain rather than have me take opiates. For me, that is the most heartbreaking part.

So to Cake with all its misconceptions: Not all of us are in pain due to an accident. Not all of us are in pain because we aren’t working hard enough at rehabilitation. Not all of us will get any better. Some of us will get worse. It will not be because we weren’t trying hard enough.

We are nothing like Claire. We want to get better. We want it more than anything. We hate taking the drugs. We avoid them when we can. We don’t lie or manipulate doctors. We are not weak because we take medication. We are strong from the pain we have fought all these years.

Most importantly, we are in pain and every day is a battle. So give us your support, not your judgement.