A chronic illness diagnose can change one’s life completely and although there are things that can be done to help make the person’s life easier, the process of adapting to the new reality could come with obstacles.
Self-acceptance is usually the hardest part and plays a key role on the quality of life of someone living with a chronic illness. Because despite not being able to do things the same way, the desire to do it will not fade away.
Bonnie was born with Ehlers Danlos Syndrome (EDS), but the doctors didn’t put the puzzle pieces together until she was 28. Her diagnose came after years of medical investigations, painful experiences and all kinds of other unrelated complications that required multiple brain, skull and spinal cord surgeries.
“Every time my parents would take me to the doctor, he always had a simple explanation for my illness: I was either ‘too tall and thin’ or ‘seeking attention’. Unsurprisingly, all these issues and more continued and became worse.”
“I had lost feeling in my feet, had horrible vertigo since 2013, my joints were so hypermobile that I couldn’t go from sitting to standing without my hip popping out, I could barely swallow, my vision was so blurry, my balance was so bad I looked drunk when I walked, my constant migraine had turned into a non-stop feeling that my head was going to explode. The list was endless of all the strange and terrible things my body was doing.”
“I’m still me. I’m just me, but different. Not better or worse.”
Before she became too ill to work, Bonnie was a personal stylist and wardrobe consultant. No wonder most of her pictures on social media show her dressed in all kinds of amazing clothes. Nowadays, she is mostly busy between medical testing, enjoying time with her husband, and the three cats and one dog they raise together. She also loves making her own clothing, jewelry, and other creative items and even has a small online shop where she sells some of her creations.
“I just love fashion, primarily vintage fashion. It has helped me be much more confident and comfortable with my body. I used to be embarrassed to be a young person using a rollator. People would stare, ask rude questions or make mean comments. It took me awhile to realize that I should not be ashamed of my condition or of using a mobility aide.”
“I very rarely see representation of young people with disabilities in the media, and when I do, they are always portrayed as sad, lonely, bitter characters. This is obviously not reality. There are millions of vibrant, talented, gorgeous, intelligent disabled people on this planet. AND WE SHOULD BE SEEN. I can be disabled and still wear fabulous clothes. Why not? I didn’t lose my fun fashion sense when I became ill. I’m still me. I’m just me, but different. Not better or worse.”
Bonnie started a blog after being told way too many times that she is too young to be ill. She wanted to share her experiences and also speak about the things that bring her joy, because being chronically ill does not mean that she cannot enjoy what she loves doing.
“Disease and genetic conditions don’t discriminate based on age. People of all walks of life, age, financial status, race… they all can be disabled or chronically ill.”
“There is a common misconception that people who are ill somehow loose their former passions and talents – this could not be further from the truth. While we often have to adapt and find new ways of doing things, we still very much want to do them.”
“My rollator has given me back more normalcy and independence – and that is priceless.”
Bonnie was first prescribed a walker at age 26 and was too stubborn to use it for almost a year. She had been falling and running into things for years, and it had gotten so bad that people in public thought she was drunk or high. “My legs were so weak and wobbly that I finally put my pride aside and started using one.”
“My rollator is now a big part of my life as it helps me with mobility, so anytime I’m walking or standing, it helps. It helps me maintain my balance, prevent falls, helps with fatigue, helps on those days when vertigo hits me, and I need something to hold onto. Those times when I am unable to walk or walk far, I can still ‘take a walk’ with my husband and get some much-needed fresh air. It helps when I’m lightheaded or when I have a POTS episode- I can just sit on the seat or fold up the chair so that I don’t crumple to the ground. Any activity that I do during the day, I at least partially rely on my mobility aide to help me with!”
“I can’t say enough good things about my Rollz rollator, it really has given me back more normalcy and independence- and that is priceless. The drop in wheelchair attachment is amazing, it gives me the chance to walk as much as I can, and then when I can’t, to sit and be pushed. Before we would have to drag a wheelchair everywhere we went, because we never knew how long my body would last. Now I just need the Rollz Motion, which means I’m happier and more independent, and my husband is glad he only has to load one thing into the car!”
“Bad days eventually end, and a new day brings new possibilities”
Living with a chronic illness has definitely been overwhelming at times, but Bonnie just kept rolling along, doing the best she could with what she has had. Having the support of her family and friends has probably been the most important part of this whole experience.
“My family and friends are always cheering me on and helping out where they can, from getting our cats to the vet and helping with cooking, to just spending time with me and keeping me distracted on those really bad days. I appreciate so much being able to call my friend and ask her ‘which doc would you pick to cut into my head?’ and her not even bat an eye. People being understanding and supportive, even when they are also scared and worried, is a hugely important thing.”
There have been many bad days, and on those ones, she’ll lay in bed and look at vintage fashion, and daydream about what fluffy skirt she wants wear next, what cake she wants to bake, or what cool crown she wants to make.
“I always remind myself that those bad days eventually end, and a new day brings new possibilities. And even if things don’t get better, I have adapted thus far. Although so much of this has been incredibly hard, I still have so many things I find joy in.”