Lessons In Resentment

Accepting help is a hard skill to master. In my life, that skill has been made less attainable by a certain type of person. They always volunteer to help me- I do not ask. But then they get in over their heads and instead of talking to me about it, they start to resent me. That resentment grows and grows to the point where they become abusive, suddenly kick me out of their lives, or turn me into a villain in their heads.

Recently, I was offered a place to live rent-free by two friends until I could receive disability or be able to work again. They offered. I did not ask in any way, shape, or form. I asked over and over again if it was still okay and over and over again was told that it was. I worried about being a burden and communicated this. I worried they wouldn’t talk to me if there was a problem.

However, over time they became less kind. Eventually, when I asked to be treated with kindness, everything blew up. I was called names, told I was using them, told they were actually trying to make me cry, and promised I would be kicked out if I kept acting how I was acting (asking to be treated with kindness). I was thoroughly confused until I heard, months after I moved out- from other people, that they were upset about money.

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All they needed to do is say something. But when things go unsaid? Resentment poisons relationships. It grows and grows until everyone has been hurt. Communication and honesty are the antidotes, but it is so hard to find people who realize this. All I had ever done was try to communicate when things were bothering me- if they had done the same it wouldn’t have ended in such an ugly way.

Instead of treating me like a human being and talking to me they got in over their heads and then hurt me. In the end, their “help” hurt me more. I would have rather struggled to pay rent than to be treated that way. I would have rather never had them in my life at all.

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I don’t share this story because it is a fun thing to reminisce. I share it because there is a clear lesson here I hope others can learn from.

Caretakers & Helpers

For those who volunteer to help someone- if you get in over your head SAY SO. Know your limits of what you can give. You aren’t being brave or saintly for pushing past these. All that exceeding those limits does is lead to resentment, and like I’ve said, resentment hurts everyone involved. If you take care of yourself you can better help others better as well.

People With Chronic Illness

For those being helped, hesitate taking help from people you don’t trust to communicate with you even if it is a difficult conversation. Even if you are receiving help, you deserve to be treated kindly. Don’t fall into the trap in thinking that you owe it to people who are helping you to be purposefully hurt, abused, degraded, humiliated, or mistreated in any form.

You are not a burden or responsibility to be put up with, but a human who should be treated as such. Anyone who loses sight of this doesn’t deserve to be in your life.

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Domestic Violence & Chronic Illness: 9 Things I Wish I Knew

When we hear about caregivers abusing patients it usually has to do with elderly abuse. There is a big part of this abuse we haven’t talked about. Caregiver-inflicted abuse can come from anyone, at any age, and can take many different forms.

The abuse inflicted by a caregiver can be incredibly difficult to notice. Frustrations are high when dealing with the illness and sometimes that can lead to excusing unacceptable behavior. Emotional abuse may be even more difficult to recognize. Often the chronically ill person feels like the caretaker is doing them such a huge favor that they could never complain about how they are treated. Why wouldn’t we? We are constantly told we are lucky  for having friends or partners in our lives.

Unfortunately, I speak from experience. I consider myself an intelligent person and I knew what red flags to look for. I thought I knew better; I would never find myself stuck in an abusive relationship. But anyone can fall into an abusive relationship, especially when they feel like they don’t bring much to the table (like many of us with chronic illnesses).

When I moved across the country a couple years ago it was really hard to function without support. I felt incredibly alone. At one point, I paid a cab driver to be my ride home after surgery. I was living in cheap hotels, in my car, or on couches; I was also really struggling with handling my health.

Then along he came. He didn’t treat me like a sick person. He treated me like an equal, at least in the beginning. It was wonderful to have someone else help to face the struggles of illness face on.

The abuse started gradually. Small threats, constantly getting mad at me, and insults became more and more common. He was constantly making me feel guilty for being sick and even claimed I was faking it. I had no one else and he was helping me some with day-to-day life so I just didn’t even recognize the warning signs. After all, I felt like a burden to all my loved ones anyway. He was just confirming what I already thought. In my mind, this messed up relationship was exactly what I deserved.

I finally began to see the problem when he had a problem with me trying to make friends and began to steal from me. Even then, it was hard to leave because I relied on his help so much. I made excuses. It is hard to date me, dealing with illness is hard, he isn’t bad all the time. I tried to break up with him a couple times, but he convinced me to go to couple’s counseling and scared me into staying with him.

Looking back there was an abundance of warning signs. He put his fist through a microwave because I didn’t feel well enough to clean it out. He broke the trash can because I couldn’t take out the trash. He refused to close the blinds when I had a migraine. He refused to let me keep the apartment cold so as to not faint. He threw me on the floor when I didn’t dry off in the shower to his liking. He left me stranded without a ride on multiple times, once over an hour away from home. I had to limp miles in the snow at more than one point. He locked me out of my apartment.

The warning signs may seem obvious, and they are now looking back on that time. However, it took me nearly having to die before I did finally recognize him as abusive. One night he drank too much, pushed me off the bed onto my head and gave me a concussion after trying to strangle/kill me. I was able to claw at him with my nails enough to get away, but still lost consciousness.

I’m sure he still has scars. It was one of the most terrifying things I’ve ever gone through and he was the only person I had in my life at the time. The concussion was so severe I had to withdraw from school. I could have died that night, and I truly wished I could have seen the big picture before getting hurt.

This is not an easy topic to write about, but I need to share with you what I wished I knew then:

  1. You are not a burden. You can enrich the lives around you, illness or not.
  2. You deserve supportive and loving relationships even if you are sick. Do not stick with anything less.
  3. Emotional abuse can be as damaging as physical abuse. It should never be ignored or excused away.
  4. You don’t deserve to be threatened, hurt, or mistreated by anyone just because you are sick.
  5. You don’t deserve to feel guilty over feeling sick when you’re unable to control it.
  6. If you are in an abusive relationship do not bother with couples counseling. Abusers won’t be honest or work on their problems. Everything will be turned on you as if it is your fault. Couples counseling made my partner more violent and convinced me further that I deserved to be a victim to his bad behavior.
  7. Ending up with an abuser is not your fault. It is difficult to not feel stupid for getting into the situation, but it can happen to anyone. It is more likely to happen to you if you have a disability. What you go through is your abuser’s fault, not yours. However, make sure you don’t allow yourself to remain a victim out of embarrassment when you finally do see the signs.
  8.  Don’t stay with an abuser because you are worried about being alone or taking care of yourself. Being alone is hard, especially with a chronic illness, but it is definitely better than getting hurt or nearly killed. You aren’t alone in your struggle. If there aren’t friends or family you can reach out to there are online and in- person support groups. There are also counselors who work with chronic illnesses and abuse that can help you recover. Shelters are an option if you have no one else to turn to. For more information or to speak to someone right away the domestic violence helpline should be able to help: thehotline.org or 1-800-799-SAFE. It isn’t easy to get away from an abusive relationship, but it will be so much better for you and your health.
  9. If you see the warning signs or red flags that your caregiver is abusive talk to someone you trust and get away from them as soon as possible!

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Caregiver-inflicted abuse doesn’t have to come from a romantic partner. It may come from friends, parents, and even health care professionals as well. No one deserves this abuse and you should never stay in an unsafe environment because you feel like you deserve it.

My Experience At The Dysautonomia International Conference 2015

The Dysautonomia International Conference was in July in Washington DC. I was able to attend this year and it was a really impressive and informative conference.

I flew to Dulles, Virginia a day early from Denver because I have never been to Washington DC and wanted a day to recover from traveling. Friday my parents and I drove around DC checking out monuments and museums. I stuck to my wheelchair so I would still have some spoons for the conference. 

Friday & Conference Attendance

Friday night we checked in. We got our name tags, a flash drive with some of the presentations, water, a pen, a bag, salt packets and some product used for dry mouth I can’t recall the name of. Next I played a “breaking the ice” game that definitely was directed at teens. At first I was worried because the conference felt like a younger crowd and I had doubts that I would have anything to talk about with a bunch of teens. These aren’t your average teens. Young women with POTS can be so mature. I spoke with one girl who was only fourteen but was more mature than some people in their twenties. I found myself really amazed by this a few times throughout the weekend. Going through something hard when you are young can really age people.

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The conference was primarily women, patients and caregivers. There were about 450 people and over 100 medical professionals. Most of the patients there were young women, many in their teens. There were some parents there without their kids and some patients there by themselves. Many others had their whole family supporting them at the conference.

I attempted to eat at the hotel restaurant (decent food overall- gross parfaits) and then went back to my room to get to sleep early for the super busy next day.

Saturday, CME, & Keynote

Saturday during the day the talks started bright and early. I heard really inspirational talks and presentations filled with more information than I could scribble down wildly. I will write more on these presentations in the future.

Lunch was arranged by region in hopes that you would meet other people close to you. The Continuing Medical Education (CME) and patients were combined at this point. CME had its own presentations geared at medical professionals throughout the conference. I went to a few CME sessions and was surprised by how much overlap there was in topics with the patient’s presentations. In fact, the patient presentations (presentations aimed for patients are caregivers) were even better than the CME presentations and that seemed to be to the consensus among medical professionals.

I was repeatedly amazed at the conference by how knowledgeable other patients, parents, and caregivers were. There were points, as there always are at this sort of thing, when people stood to ask a question but actually shared their life story. It always happens at this sort of thing. However, most of the questions were really well thought out and indicated a higher understanding of some more complex Biology.

Unfortunately at lunch Colorado was squished in with California and there was no one else at my table even remotely close to Colorado. They did a great job with the food and dietary needs. There definitely wasn’t enough salt (but is there ever). During the lunch break there was also a vendors fair. Dysautonomia International was selling awareness gear, NormaLyte, medical testing facilities, and books to be sold and signed. After the afternoon break there were even more presentations before the awards ceremony.

The keynote speaker was amazing. Dr. Lisa Sanders (real live House, MD) spoke about tough diagnosis, a struggle we all relate to, and was a wonderful speaker with interesting stories to share. Her book is now definitely on my to read list.

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It is never lupus.

Next, the physician of the year award was given to Dr. Blair Grubb. A video was shown dedicated to his wife who he lost this last year. It was absolutely beautiful and extremely sad. He didn’t speak, but it was beautiful and I don’t think he needed to.

Volunteers of the year Sarah Mendelowitz and Hanna Gully were announced and the people who ran the conference as well. They also really helpful in the talk about advocacy.

Meanwhile, there was more food my stomach wasn’t going to let me eat, drinks, and a very small dance party in the middle of the floor. Mostly teens, it was adorable. I didn’t stick around through much after that; I was exhausted from the day before.

Sunday & Lobby Day

The next day started bright and early with more talks and presentations. Later in the day we had a short lunch break and then more talks. About midday when I wasn’t too interested in the topics I ducked into a room near the presentations to participate in Mayo Clinic’s research. The research involved the Beighton Test (surprise I still have hEDS), questions, an examination of your legs for blood pooling, a blood draw, and a lying and standing blood pressure and heart rate monitor. It was nice to feel that I was contributing to learning more about POTS.

After the last presentation there was a final question and answer panel. It was a little crazy. A lot of the questions were great, some were not. A lot of the answers were great, or some went on and on for fifteen minutes saying nothing.

At the end of the day Sunday there was a training for Lobby Day which just under 100 people participated in. With how hot Washington DC was and how short on spoons I was doing I decided to skip the Lobbying. Honestly, I was amazed that I didn’t have to skip more presentations. It was a really long couple of days, especially after traveling with POTS. I opted for swimming and talking with some other POTS patients before I went back to my room for a movie.

Standing ovations were given multiple times at the conference. Everyone certainly deserved them- I just found it funny at a Dysautonomia Conference.

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Oh good we are standing again.

The overall feel of the conference was one of hope, support, and positivity for the future. I hope to be able to attend again. The people who ran the conference were really amazing and did an absolutely wonderful job.