I fake my Ehlers-Danlos syndrome (EDS) symptoms all the time.
For as long as I can remember.
It is second nature; it’s why I am so good at it.
Now I don’t mean I’m faking the actual symptoms of my condition, making them up or exaggerating them. They are very real to me, and they are ever-present in my life. Quite the opposite, in fact — because of the invisibility of EDS, I have become a master at faking being “normal.”
Here are the top 20 ways I have learned to conceal my illness on a daily basis and to blend with the masses — to appear to be “normal.”
I make a huge effort to have a happy life and try not to let things get me down. Just because I am happy while being ill doesn’t mean my conditions have disappeared. It simply means I have chosen to be happy in spite of my illness, which is no mean feat. I have mastered the “Fine, thanks” response when someone asks me how I am — I don’t believe anyone honestly wants to hear the truth! It’s important to be happy. It’s good for your health.
I put my face on every single day. It is my mask for the real world and I like wearing it. Only those who know me well can tell how I am feeling behind the smile and the makeup, by looking into my eyes. Even if it’s just a bit of mascara and a sweep of blush, it makes me feel better about the day ahead, more human.
3. Ditching the Kettle
I have boiling water plumbed in because I can’t lift a kettle without a dislocation.
4. Holding a Pushchair
When my children were young, my mobility was at its worst. I would get out the buggy to hold on to when I walked along, even if the children didn’t need to sit in it. I would let them hold on and walk slowly with me while it held me up. I miss the fact that they are all too big for a pushchair.
5.Leaning Instead of Standing
Standing is hard work 1. because of pain and 2. because standing still makes me dizzy, and when things are bad I can be clammy, shivery, breathless and can even faint when upright. You will notice me just propping myself up on a table or a doorway.
Sitting and standing for any length of time is uncomfortable and moving just helps. Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out.
7. Standing Up Slowly
Always, to minimize the head rush and dizziness.
8. Pacing Myself
I am driven; I like getting loads done, but I would find that I would push and push only to crash later. Pacing used to be my enemy, but I have had to work hard to make it my friend. All of my daily activities are paced and no one would ever know! It increases the amount I can achieve over a given period instead of feeding into the boom-and-bust cycle.
You can’t see fatigue, unless you know me well, and on the days when my fatigue is at its worst, you won’t see me at all because I physically cannot get out of bed or leave the house. My life is planned 24/7 to manage this element, but sometimes it creeps up on me and catches me out. I have collapsed before, unable to put one foot in front of the other, and been rushed to hospital. People won’t know or understand how bad this can get because they just wont see it.
I have become an expert at hiding my pain (and I have a pretty high pain threshold), and you won’t see the amount of medication I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy. I am a master of disguise, too. I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it, and unless I knew you well I wouldn’t even tell you!
If I do have something particular to do on a certain day, then an immense amount of planning goes into it. I was still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction, because I had a meal out two days before and didn’t plan enough time for my body to recover in between.
This has become like second nature. This time of year, just walking to the car there are obstacles. The blanket of autumn leaves may look pretty, but in the dry they mask the unevenness of the pavement beneath, and in the wet they are slippery. I always walk around things where I can or take another route.
13.Wearing a Vest
I have the ability to stand in 30 degrees Celsius heat in the summer and still have goosebumps. I wear a vest all year round. I’m also fond of a scarf, gloves and hat.
14. Orthotics and Braces
These are hidden in my shoes, under my jeans. Unless something visible like my wrist or thumb is braced, you would never know. There was one time this year my ankle was in fact braced, as it was subluxated and wouldn’t relocate. A mom at school spotted it and questioned if I was wearing a tag! What she didn’t notice was the excruciating pain on my face as I had to bear weight — I have learned to hide it so well.
Skinny jeans aren’t a fashion statement for me; they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints.
16. Eating Well
Eating small, regular meals helps me manage a whole host of gastro and autonomic symptoms, as does eating gluten-free. If you went out for dinner with me, would you know by my choices?
17. Being Vague With Plans
This is another one of my coping methods, I can never tell how I will be feeling from one day to the next, let alone a week or two in advance, so I tend not to make definite plans unless I have to.
18. Linking Arms With a Friend
To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky with slippy leaves, a wet floor or if it’s icy.
19. Seeing Friends
Making time for a regular cuppa with friends to chat about anything else but EDS, health and hospitals.
20. A Sense of Humor
This is so important when faking being “normal.” Being able to laugh at yourself and having the ability to look back on situations with a smile (because there are many) is a must.
So when someone calls me a “faker,” in a way, they are right. I have become a master at concealing EDS to just live. It’s my life, and I am going to make the most of it and will not apologize for that. EDS is a huge part of who I am, and it never goes away, but I am committed to working hard so it doesn’t become all I am.