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27 Lessons I've Learned Living With Ehlers-Danlos Syndrome and POTS

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I’ve been disabled for four years and three months. I’ve been thinking about things, assessing.  I’m typing this up while I sip my tea.

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

These are some of the lessons I’ve learned:

1. I don’t always get the terms right. I said “sclerosis” instead of “scoliosis” for years.

2. Some people just don’t care, but they are so much easier to deal with than those who think you are full of it and faking.

3. I no longer care what people think. It’s very freeing.

4. I used to hide what I was going through so I wasn’t called a hypochondriac or undermined as being “ridiculous” or “exaggerating.” I tell everyone who will listen now. It doesn’t matter if people believe you. It matters that you believe yourself. You could also save a life.

5. Folding sheets in a wheelchair is an art form.

6. With Ehlers-Danlos syndrome, you get diagnosis after diagnosis. It’s never “just hypermobility” and that can be frustrating. Collagen is defective in the body and as it hits different body systems, it breaks down different systems. We are often called “attention seekers” or that we have “Munchausen syndrome” when in fact, we are dealing with many co-morbid conditions and seeing many doctors for each condition. i.e. my boys and I have over 20 different diagnoses between us, each one a result of faulty collagen. Considering the body has more than a 1,000 possibilities of problems, there are more than 100 joints, collagen is in 80 percent of the body (bones, blood, skin, organs, vessels, and more), we are considered a mild case.

7. Life is short. There is a death within the EDS community at least once a week.

8. We are used to doctors not knowing about us. I had symptoms 10 years before this even had a name. In 1993, doctors named postural orthostatic tachycardia syndrome. Before that it was “hysterics,” “all in your head,” lack of exercise, laziness, and some people were even put in asylums. Newer doctors are being educated, but we have a long way to go.

9. We often “see” these specialists through email, Skype, or expensive travel. I love and respect each one of them.

10. There is no cure. There is no treatment. There is no therapy. There is only “quality of life.” That’s OK, I learned “quality of life” is better measured as character development, humor, laughter, hugs, hope, joy, mercy, meekness, being humble, and love. Not capabilities. I’m working on it.

11. Getting mugs from a shelf with the grabber is a talent.

12. Some people are indoctrinated that people with disabilities can’t work. Many can, many can’t. Each individual is different. Do what you can, when you can, for as long as you can.

13. Short people now have my sympathies. I didn’t know your woes until I went from 5’7″ to under 4 feet in a wheelchair.

14. Support is rare and valuable. If someone gets out of a car and walks to a store just fine, and they have a disability card, they are not fine. I had a card a year before anyone could tell something was wrong with me. Supporting someone, a little understanding, is more valuable than gold. It is the most valued commodity within the disabled community. Not all disabilities are visible. Invisible does not mean imaginary.

15. I can see the top shelf of my fridge because it’s glass, and it needs cleaning. I learned it doesn’t matter.

16. The house cleaning doesn’t matter. Unless I need to disinfect everything because we have an autoimmune disorder.

17. Doing dishes in a wheelchair is great core muscle exercise for me. Lean up, grab item, lean back, wash item, lean up, rinse item.

18. The only “cure” for any ailment is chocolate. Unless you’re allergic, then it’s cheese. I love both.

19. Eat what you want, when you want, as much as you want. Unless you have health problems, then do that in smaller portions, less often.

20. Caffeine is my friend.

21. Looks don’t matter. I used to be less than 10 percent body fat and solid muscle, but due to absorption issues, couldn’t put on weight. I now have a “healthy weight” and no thigh gap, no muscle, and my arms flab in the wind. If I wake up and feel good, that’s all I care about. The people who love you, love you. Not what you look like, that’s true love. I’m blessed to have that with my husband.

22. Loneliness is a lack of understanding, not how many friends you have. If you enjoy the company of pets, you will never be alone.

23. A good health day is better spent in laughter than in chores. Later when the health gets worse, you will regret time spent on frivolous things instead of with those you love and care about.

24. If you can run, wonderful. If you can walk, wonderful. If you can wheel, wonderful. If all you can do is lay in bed and stare at the ceiling, don’t punish yourself. The sickness is at fault, not you. You are still wonderful.

25. One reason the zebra is a great mascot for rare diseases because it protects the weak. If a zebra is under attack, the rest of the herd will put the weakest and youngest in the middle of a circle. The strongest are on the outside and the predator sees a giant black and white animal blended together. Zebras can run up to 80 miles per hour. If you mess with one zebra, you mess with the whole herd.

26. A herd of zebras is called a dazzle. We dazzle our IVs, bracing, oxygen tanks, feeding tubes, and hospital bracelets like pros.We are truly fearfully and wonderfully made. Our bodies are intricately designed. When one part is affected, the whole body is affected. Same goes if one part of the body is strong, the whole body is lifted to that strength.

27. Love to learn, learn to love.

Originally published: November 14, 2016
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