Coping With 'What Could Have Been' in My Life With Chronic Illness

I am excellent.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Also modest.

The thing is, my body isn’t so excellent.

One of the most difficult things to learn to deal with when you have a chronic illness is the curse of “what could have been.” Many people I know, people who have no health problems, have said to me, “Well, Natasha, that’s just life. You don’t always get to do what you want.” I would argue it’s so much more than that.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Getting ill at whatever age sucks, but when you’re in your teens and 20s, you’re supposed to be out there, living the life and doing all the things you’re supposed to be doing to at least try to create something. A huge amount of opportunities are taken away from you, and things you would take for granted just aren’t even an option.

A few of my friends, one in particular who this blog post is for, have been speaking to me recently about their feelings of unfulfilled potential. And trust me, I know how they feel. It’s the one thing I have to constantly push to the back of my mind in order to get through each day.

I have had opportunities, personally and professionally, that have been really fantastic and in some cases once-in-a-lifetime. However, because of my declining health, I’ve had to stop each and every single one of them. Managing my emotions around this is probably as hard as the physical act of having to stop. And while it still affects me, I’m getting more and more used to figuring out how to cope with it. But, I have to say, sometimes it really does affect me. And most people don’t see me when I’m a crying hysterical mess about it. It’s OK to grieve for what you feel like you’ve lost, and don’t let anyone tell you that it’s not. I just think it’s just incredibly important to not let it overwhelm you entirely and keep you stuck there. My mom has a rule that she’ll let me wallow for a day and then I have to deal with it.

My current way of dealing with life is that I just have to go with the flow. And honestly, this is the best advice I can give to anyone. Here’s why:

The last few months have been particularly bad health-wise. I had to stay with my parents at the house and was incredibly unwell. Then I felt a tiny bit better. And yesterday I had two hours where I felt better than I did in months. It was extremely exciting. And then my body crashed and I felt utterly rubbish again. It made me sad.

It was like a lovely little microcosm of my whole experience with chronic illness.

The lack of security in knowing when you’re going to be able to do things is the one thing that stands in my way when I’m trying to go out there and pursue the things I enjoy. After brief (read: several prolonged) freak-outs about not having a full-time income, I realized that no matter how much I wanted to be working a full-time job in a field that I’m passionate about, I’m just not well enough.

I’m trying to learn more about pacing and being sensible about how I look after myself. Pacing is the one thing I hate. I’m very boom-and-bust, but I think that’s quite common for many of us. I’d rather push myself to keep going, keep trying, keep fighting as much as possible, so that when I stop it’s not my decision, but my body forcing me. But I’ve realized that stopping and resting, truly resting, is the one thing that I can do to try and make sure that I’m listening. Now when I do an activity that I know is exhausting, I won’t spend hours afterwards working in bed (that’s not resting!) and I’ll make sure to really plan what I’m doing to try not to make myself worse.

When I talk about not pushing, I don’t mean just stopping and giving up. It’s really important to learn your limits and to keep trying new things, even if you have to stop. Find compromises and be proud of small accomplishments.

I’m interested in too many things to have a fixed goal, and I don’t like them anyway. I need to be able to be flexible (ha, Ehlers-Danlos syndrome joke) enough to make changes to what I’m doing while trying not to get too upset if I can’t do something that I want to because I’m not well enough. Accepting that is really important. It’s not using my health as an excuse. It’s accepting where I am right now physically, and making sure I’m doing everything I can to look after myself.

One thing I have never struggled with is guilt. I don’t somehow blame myself for the way I feel. It’s not me, it’s not a reflection on me. It’s my body. I have a condition that I was born with. My Ehlers-Danlos syndrome collagen dysfunction has buggered me up. That’s not my fault. I never see my inability to go and do things as my fault. I don’t feel guilty about it. I know with all my heart that I try so hard every day just to keep going. That anything I do on top of that is a big deal. Seeing small things as victories seemed super lame for a really long time. But it’s vital to start understanding that they are.

Is it frustrating? Of course it is. But if there’s any advice that I can depart in a tl;dr kind of way, it would be this:

1. Never give up — find compromises and things that keep pushing you forward. For me it’s my course, teaching myself to code, doing small flexible freelance jobs (I am determined to find work that is me-friendly. It may not be for a big company, but I know I have enough to offer that I can find a way to make it work) and writing this blog

2. Celebrate your small victories.

3. Don’t feel guilty if you can’t do what you thought you would be doing.

4. It’s OK to grieve for what you wish you had.

5. You’re still you.

6. Find a support network and people that understand you without you needing to explain.

7. Your life isn’t over, it’s just going a different way than you thought. Channel that into something else, no matter how small. Even if it’s finding the energy to make some food or have a shower.

8. You’re not the only one going through this and the more we all try and raise awareness, the more support (hopefully) we will get.

Follow this journey on Natasha Lipman.