Living with Lyme disease is no small challenge, especially for those of us dealing with late-stage Lyme. We have to fight for the correct diagnosis and then fight for the adequate treatment. This complex illness requires us to be medical detectives, sourcing the most suitable practitioners to help us along on our journeys, researching everything from immune boosting supplements to co-infections, and keeping a close watch on how our bodies are coping with everything from treatment and detox to physical activity and even the weather. And all this is just the tip of the iceberg, right?
If you’ve had Lyme disease a long time then you’ll know how it can affect every area of your life.
A disability is defined as “a physical or mental condition that limits a person’s movements, senses, or activities” and late-stage Lyme certainly ticks those boxes.
With Hidden Disabilities Week taking place from Monday 14th October, it’s a good opportunity to touch on one of the many other issues we have to face: not only is Lyme disease one of the most poorly-understood illnesses of our time, but it is also largely hidden from the outside. And this can cause more problems than you might first think.
We asked the LDUK community for their thoughts and experiences on living with a hidden disability, and have collated their responses below:
“I feel like one of the awful things about Lyme as an invisible illness, is that not only can the people around us not see our suffering but our doctors don’t see it either. Also, trying to explain to loved ones that fluctuating symptoms aren’t predictable and can’t be wished away because of an important event… if only!”
“I often look well but my bladder is unable to empty, my balance is poor, I can’t sleep, think or remember properly. I have tingling under my skin, made worse by exposure to electromagnetic fields and my limbs feel weak. My eyes can’t tolerate light from time to time and I use a walking stick. But I look well.”
“Whenever I move any part of my body every joint feels like a bike chain that’s jumped out of gear, constantly cracking, clicking and grinding. It feels like my legs are held down by weights and I cannot lift them properly no matter how hard I try, like they are independent from my body and won’t take instruction. …But I’m ‘so young’ I can’t possibly be disabled because I don’t look old enough… When I get my walking stick out in front of people they say, “Oh my God what’s happened?” thinking I’ve sprained my ankle or something. I went to a restaurant and they wanted to seat me at a low table they said, “because of your leg” thinking I must have broken it. I guess I must look fine on the outside, on a good day anyway!”
“I think the only really visible symptoms I have manifest from the fatigue. I have rings under my eyes and am pale all of the time, but when you’ve been ill for so long people forget what you used to look like and the ‘tired and pale you’ becomes your new identity. The pain and brain dysfunction are the things that are least visible and I think the most difficult for others to even try to begin to understand. At its very worst, the pain felt akin to having wounds all over my body and bleeding to death, yet nothing at all was visible from the outside. The brain dysfunction I’ve experienced overall has been my most debilitating symptom, but when you can still speak and answer people’s questions during a quick meet-up, it’s impossible for others to understand how severe it is. I spent a week on holiday with a friend and it was only after spending days in a row with me that she could begin to understand a little what the brain dysfunction was doing to me.”
“I’m a beautiful smile on the outside and an unpredictably painful mess on the inside.”
Having a hidden illness can impact on all areas of your life…
LDUK member and volunteer, Rachel Bowerman, recently travelled solo to New Hampshire, “Living with the effects of Lyme disease is really tough, and going on holiday is no simple task! I was anxious about a lot of things, including asking for the help I genuinely needed, because I felt I’d be judged as lazy or a hypochondriac, but making use of mobility assistance is a huge help, and you’ve got to be mindful of pacing – especially when travelling. Still, you can’t help imagining that people are staring at you thinking: I saw her walking around earlier like there was nothing wrong with her. Surely she doesn’t need a wheelchair – she looks fine. They can’t see the pain I’m in or how difficult it is to make it through a busy airport with fatigue and brain fog. I try to remind myself that most of the time people are just getting on with their own lives and if they do appear to be staring, maybe it’s because they have a friend or family member with a hidden illness or disability… if anyone does confront me though, I’m always sure to let them know that not all disabilities are visible. Short and sweet, it usually does the trick!”
If you’re interested in reading about Rachel’s trip, visit her blog.
Do you have any thoughts you’d like to share about living with a hidden disability?