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What to Remember the Next Time You Meet a 20-Something With Fibromyalgia

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On the outside I may look like a typical nearly 30-year-old. I study, work, live with my partner and am planning for an overseas trip and a wedding. But appearances can be deceiving. I live with chronic and mental illnesses, including fibromyalgia and chronic fatigue syndrome, and there are many things I have to deal with that the average person my age doesn’t even think about:

– I go to uni, attend classes, pay attention, submit my work, but when I get home I am so tired that my partner needs to take my shoes off. Or I’ve done a four- or five-hour shift at work and cannot get to sleep for three hours because of being in so much pain.

– I go out with friends and need to make sure that I have no plans at least the day before or after so I can rest and recover. And I still may have to cancel if it’s a bad day. And those plans need to be during the day, but not too early, is the place too loud, is the food suitable, how long will it take to get there, will there be chairs with backs…etc.

– Should I do the dishes or make myself breakfast? I may be able to do one of those tasks, but not both, and on a bad day I hope there is something I can just reheat because standing at the stove to cook is more than I can manage. Sometimes even reheating something is too much.

These are just a few examples of how hard things can be.

There are also some things I have gotten better at because of my illness:

– Appreciating the little things, celebrating the small tasks I do. I get so excited when I am able to do the washing or do a load of dishes, even doing things like getting up and having a shower are a big deal. It’s important to celebrate what you do do, instead of focusing on what you haven’t done.

– Prioritizing my time and only spending energy on the things and people who are important to me. Planning things differently and looking at my week as a whole to space out activities.

– Slowing down and listening to my body. This has been a big one for me as I always wanted to be doing everything all the time.

Living is a constant balancing act between energy conservation, pacing and energy expenditure. Just because I’m out and about and smiling doesn’t mean I am “better.” I am most likely in a lot of pain and wading through high levels of fatigue and brain fog. But, I am choosing to spend my energy on something I enjoy and will likely need time to recover from this expenditure. I have made the effort to go out as I know getting out of the house and doing enjoyable things when I can is important for my health.

A psychologist once gave me a really useful analogy of energy being like an oxygen tank. There are things you do that deplete the tank and things you can do to refill the oxygen tank. The difference with chronic illness is that you have a hole in your oxygen tank (or multiple holes). So the oxygen is always draining out of the tank and goes down faster than it might for other people, making it really important to do things to fill it back up. Whatever these are for you, experiment to find the things that work.

Please never tell a person with chronic illness they “don’t look sick.” We know. We’ve likely had to convince multiple health professionals of the existence of our symptoms and may already second guess ourselves enough without this coming from other people. Accept the person for where they are and provide support if you are able. Having support from others is so crucial to us as we often feel extremely isolated.

I continue to live each day, as it comes. There will be good days and bad days, and some days where I cannot get out of bed. I accept the way things are, but have not given up on things getting better. My illnesses are a big part of my life but I am still me, still a young person trying to figure it all out and live my life the best way I know how.

Getty Image by marko_nb

Originally published: April 10, 2018
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