A STRANGE AND INTRICATE HEART

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• I have an autoimmune disease. The following has helped me.

  1. Appropriately medicated, and with appropriate lifestyle choices, I am mostly okay now. You should not look at particularly deep troughs as indicative of what the illness will be like going forward; those bad days are not your life sentence. Living with a chronic illness means there are good patches, and bad patches. These can be intrinsic to your health, or a reaction against external conditions, but always remember when you’re in a bad patch that there will be good patches, too. When I look back to before I was diagnosed and immediately after (where you are now), I marvel at how much I was able to do, and what I put up with because it had snuck up on me slowly.

  2. You have a chronic illness. You may not be able to do things you did before, the same way you did them, at the same intensity. It sucks, and it’s hard - it took me literally years before I learnt my lesson enough to behave with relative consistency, and I still stumble every now and then - but it’s a fact. It felt a bit like giving in, for me, but I needed to acknowledge my illness; it did make me different, and it did change my needs and lifestyle, however much I hated it. It sounds weird, and maybe it’s just me, but I needed to make a commitment to my illness - really, a commitment to myself: I will prioritise my quality of life and needs.

  3. Speaking of priorities, I needed to figure out what was truly important, and leave the rest behind. This was a lot easier when I realised there would be myriad opportunities to pick back up, or realign my priorities later on. In a bad patch - especially in a bad patch - you have to accept you cannot do everything, or sometimes even very much, and that’s okay you’re sick. Don’t waste time on shit, and definitely don’t waste time feeling guilty. […] If you can do something to ease your pain, you do it. You are in pain; they don’t give out medals for suffering, and the mental and physical resource you gain can be deployed elsewhere.

  4. Neither be ashamed, nor afraid, to ask for help. You have a chronic illness; you have special needs; you are entitled and eligible for support. It is your right. The government, and your workplace is obligated to support you, and people who love you should do so as well.

  I wrote a comment on the blue, just the other day, talking about how having a chronic illness can be very isolating, feel like you’re living in your own country at times. I will not lie: It is very difficult for other, healthy, people to understand what you’re going through, and what it means. […] You don’t have to let your illness define you, but is an undeniable part of you at least for now, and the more people that understand what that means the easier things will be for you. When you have a chronic illness you need extra support, there’s no getting around it. Do what you need to do, to get it.

  — this comment by metafilter user smoke is very relevant for chronic health issues generally and it’s made me feel better over the past week or so, especially: “those bad days are not your life sentence”  (via aquamirage)

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