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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The Problem With Telling Patients They Will Grow Out Of POTS

Telling a young person with a chronic illness that they will grow out of it sounds like fantastic news. With POTS, it is a trap that is easy to fall in. It feels lovely to give someone hope and good news who is obviously suffering, but when it is false hope it can cause some serious issues. It may sound strange, but when we are waiting for something horrific to end we stop actively living our lives. Everything becomes about what will happen after this terrible phase in their life. “I’ll finally start dating once I grow out of it.” “When I grow out of it I can have a social life again.” “When I grow out of it I can finally travel.”

As many as 1 in every 100 teens has POTS. Sometimes these teens grow out of POTS in ways adults seldom do. I was diagnosed with POTS when I was 18. Because I was right on the borderline it was assumed that I would grow out of POTS. I had at least 5 different doctors inform me I would grow out of POTS.

As a result, I stopped living and just survived, always waiting. When people are just living out the time in their life waiting for when things change very little joy enters their life. Waiting leads to not seeking out the things you love and not connecting to the ones you love. All the joy and happiness in your life is always in the distant future. Depression seeps in and for awhile you can withstand on hope for a healthy future alone. But when year after year it doesn’t come it gets harder to believe that things will change and suddenly all that you were living for slips away.

And the hope did slip away.
As I got older doctor’s stories changed. Instead of the confident outlook they had at 18, 19, and 20 things started to change when I turned 21. At 21 they told me, “You’ll probably still grow out of it.” I was heartbroken when it wasn’t true. At 22 they told me, “You could still grow out of it.” I was dismayed. And at 23, “It is unlikely you will grow out of it.” By 23 I was destroyed. At 24 and 25, there is no talk of growing out of POTS.

False hope hurts.
I started to feel lied to- stupid for looking forward to things. Not growing out of my condition led to a dissipation of trust, especially of the doctors who gave me false hope. Sometimes doctors in general. Why should I ever listen to them? I was convinced that because they lied to so many times and would do it again.

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False hope keeps us from coping with our illness.
When my illness felt temporary it was easy to just be in denial. I would pretend to be healthy, then push myself too far and be bed-ridden for weeks. I would try to go out with my friends, keep up with them, and then not be able to walk for the next two weeks. I convinced myself I was still a normal healthy teenager then came crashing down. But nothing was wrong. In doing so with my illness, I hurt myself in this stage of denial. Because it was all temporary I didn’t even bother dealing with my condition. As a result, I missed out truly living. If I had learned to manage and cope with my illness I wouldn’t have missed out on so much of life. I would have spent that time adapting instead of waiting. I could have spent that time learning to be happy despite my condition.

In the year before my 24th birthday, I came to terms with the fact that I am not one of the people who will grow out of POTS. Since I have had the best years in terms of coping. In no way has any of this been anywhere near easy. Letting go of that false hope, disappointment, anger, and frustration really helped me actually deal with what was happening and move on to live my life. I learned to cope; I adapted to survive.

I truly understand the instinct to tell people they will grow out of the condition. Even at the Dysautonomia International Conference, I found myself saying that I hope others would grow out of POTS. I know that false hope has made things harder for me so why would I impose that on other people? We want something to hold on to and to give others to hold on to. We don’t want to admit that the reality is that this is something we will have to deal with indefinitely. However, learning to adapt to POTS and live life despite it made for a far more satisfying life than waiting for it to pass.

My advice to anyone, likely to grow out of POTS or not, is to adapt and learn how to live your life and find happiness despite your condition- whether temporary or forever. Waiting for it to get better and putting your life on hold will only hurt you more. It is okay to have hope but don’t let your hope leave you frozen in place.