An Open Letter to Sufferers of Ehlers-Danlos Syndrome, POTS, Lyme Disease and Chronic Illness in General

Because I am sometimes contrary, in the very post after I stated that I rarely talk about chronic illness in this space, I’m now talking about just that.

I often get asked for advice about living and cooping with chronic illness.  In the most recent round of emails I felt like I was talking to more than just the person I was writing to, so I decided to share some of my thoughts here.

No matter how alone you feel, know that you are not actually alone.  That there are many people who know your pain.  Too many people.

Creative thinking is your best friend.  Think about all of the things that you love to do and the things that you need to do, the most important things, and find ways to make them easier.  Readers of my blog know that for me one of those things is knitting.  Supporting my elbows on a nursing pillow has helped to eliminate a lot of strain on my body.  Perhaps a special mat at the kitchen sink or stove would help to alleviate pressure on your joints?  Maybe you really do need that air conditioner or extra pillows to support yourself during sleep or just a really comfortable place to sit and rest.  Seemingly little things can make a big difference in quality of life for us.

Make your home and life accommodate you in as many ways as possible, not just in what you surround yourself with, but how you approach tasks.  For example being in the garden might be easier during certain hours.  For me that’s before the sun breaks the treeline or after it sinks below it or on cooler, overcast days.  Instead of bending or kneeling to work try sitting with all of your tools in reach, maybe on an old folded up blanket for a cushion.  Weed or plant as far as you can reach and then slide over to the next spot.  Find ways to keep doing what you love.

Nature is the great healer.  Seek solace in the great outdoors.  I say this full well knowing how complicated that statement is for those with Lyme.  A stunted half-life confined indoors with fear is often harder.

If your children are affected, forgive yourself for not knowing sooner, for not understanding what it would be like.  Guilt can not help them now, only love and commitment can.  Forgive your own parents for not having or seeking the answers.  In most cases, they just didn’t know.

A hot bath can take the edge off of many kinds of pain (just be careful not to pass out getting out of the tub!).

Diet makes a huge difference for myself and my family.  My husband could eat a brick and his body wouldn’t notice, while the rest of us have to turn away many healthy foods because we can’t handle them, never mind the junk!  It’s hard.  Very hard.  But it keeps us going.

Try to find ways to manage your pain.  You won’t always be able to tough it out.  Hurting people tend to be angry people and angry people tend alienate the ones they love.

Sometimes all you can do is hope that tomorrow is a better day.  That’s ok.  It might be and it might not be, but never lose hope.  Never lose hope in the future.  Never stop trying to find ways to improve your quality of life, but (!) do not wait until that miraculous “someday” when things are “better” to start living your life.  This is the one body you get.  The one life you get.  Use them both to their fullest.

Try to take the time to find beauty in life and be grateful for something everyday.  Some days this will be hard.  Some days it will be impossible because you won’t be awake for long enough or lucid enough or able to tolerate your pain.  Keep trying.  The first day that you can is, in and of itself, something to be thankful for.

Resist the temptation to define yourself by your illness.  It is an aspect of your life, perhaps even a very large aspect, but it is not who you are.  Chronic illness takes so much from a person, do not let it take your identity as well.












3 thoughts on “An Open Letter to Sufferers of Ehlers-Danlos Syndrome, POTS, Lyme Disease and Chronic Illness in General

  1. Dandy

    I just ordered (Inter Library Loan) the Summer Book. It looks wonderful.
    Hearing of other peoples’ struggles always helps me step it up a notch when meeting new folk – as I can not know what they are dealing with.
    Thanks for sharing.

  2. Jasmine

    Beautifully written! My current struggle is in your last point – about not letting it define me. I’m still adjusting and am in a period of flux where my symptoms are not yet managed so I’m off work on disability. It’s redefining me somewhat and I know I’ll emerge on the other side where it’s just one part of my life. For now I’m just trying not to let it consume me. I’m getting there. Each day I learn, each week I find new tricks to cope, each month I grow and the illness seems smaller. Thanks for sharing your tips and thanks for sharing your life.

  3. Zena

    When I read this yesterday I was too emotional to respond. I feel like it has been written especially for me. I have been living in a black hole this year and a dark cloud for quite a few years before that. My body literally crashed and my world came crashing down this year with an auto immune disease. Sharing your story makes me feel I am not a lone. Not only have you suffered but you are able to give some really good advice and self care tips. I don’t want to be defined by my illness I want to live a fulfilling and contributing life to my family and community. When I’ve least expected it a kind hand has reached out. Sometimes I feel it has been one step forward and two steps back but I have to keep the faith. Thank you for taking the time to discuss such a big part of your life and offering some kind tips. I hope you share more in the future. Many blessings to you.

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