1. Do you have a primary diagnosis, if so, what is it?
A: Ehlers Danlos Syndrome (hEDS), Dysautonomia (POTS), and Gastroparesis.
2. How long did it take you to get diagnosed?
A: I first had symptoms as early as a few months old, but it wasn’t until I was in my late teens that I was diagnosed with Ehlers-Danlos Syndrome. A few years later, I was diagnosed with dysautonomia, and just last year I was finally diagnosed with gastroparesis. All in all, it took well over twenty years to have all my diagnoses in place.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: When I was first diagnosed with EDS, I felt an overwhelming feeling of relief, followed quickly by an almost instantaneous period of mourning. My entire childhood I had been told one of two things - “it’s in your head” or “there is something wrong, but we don’t know how help you.” I was, and still am, very angry that it took so long to identify the cause of all my medical issues – and even longer to confirm them from when they were initially suspected. I often find myself wondering where I might be physically, if only I was diagnosed sooner. Instead of spiralling down a path of “what ifs,” I try to replace those thoughts with reminding myself how fortunate I am now to have a medical team in place to keep me stable.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Your experience is valid. Even if it doesn’t make sense to you. Even if your symptoms are inconsistent or sometimes impossible to explain – they are valid. You deserve to be listened to, you deserve respect, and you have every right to demand both of those things, for as long as it takes until you get the answers you deserve. You are worthy. You are valued. You are loved.
5. Has your chronic illness changed your perspective, and if so, how?
A: I’ve been chronically ill for as long as I can remember, so it’s hard to say how it’s changed my perspective, as I don’t really have a “before.” As time has gone on, I’ve had to give up hobbies that require physical activity (such as sports and dance) and replace them with more less physically demanding ones. Whenever I start to mourn what I’ve lost (I still dream every night of basketball and ballet!) I try to focus on what I’ve gained. If I hadn’t been forced to find more accessible hobbies, I wouldn’t have discovered photography or graphic design, two passions I have been fortunate enough to make a career out of.
6. What moment are you most proud of in your chronic illness journey thus far?
A: After a childhood of unanswered symptoms and bouncing back and forth between specialists, I began to research answers that none of my doctors seemed to have. I printed out a medical article about Ehlers-Danlos Syndrome, brought a hard copy to my paediatrician, and said, “I think this could be an explanation for my symptoms. Please, can we at least rule this out?” As it turns out…we couldn’t! I have never been more proud than the moment a doctor told me, “You seem to really know what works for your body, and what doesn’t. Your ability to fight for your care is very inspiring. Don’t ever let that be taken that away from you.”
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: When I was in the process of getting my diagnosis of Ehlers-Danlos Syndrome, a person in a position of power did everything they could to try and convince me (and others) that I was “lying and manipulating others to gain personal attention.” Their actions sent me into a downward spiral of crippling anxiety, depression, and self-doubt that I still struggle with even today. I went from being confident in my identity as a disabled individual, to desperately trying to hide my disability in an attempt to appear like I wasn’t attention-seeking. As a result, I went years being too afraid to tell my doctors about troubling symptoms I was having, for fear I’ll be told I was lying or being manipulative. What that person did all those years ago completely shattered my spirit, but with the help of my friends, family, and a supportive medical team, I am slowly putting back the pieces and rediscovering my self-confidence and ability to speak up for what’s best for my body and mind.
8. What or who has helped you the most during the lowest days?
A: The best piece of advice I ever received was, “It’s okay to have days where you aren’t okay, as long as you know you will be.” Some days I give myself permission to wallow in bed with the curtains shut, but I always promise myself that the next day I’ll pick myself up, dust myself off, and make to feel the sunshine on my face. Practicing self-care is something I had no concept of for the longest time, but now I make sure to treat myself to things that make me feel good mentally and physically on a daily basis. You don’t need an excuse to be kind to yourself – you deserve kindness and respect from everyone – yourself included. Treat yourself the way you would treat a dear friend who was ill – with kindness, patience, and gentleness.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: What you feel and experience physically is just as valid as what you feel and experience mentally. It’s okay to embrace your diagnosis, and it’s okay to hate your diagnosis. And it’s more than okay to fall anywhere on the spectrum between the two on any given day. If you need to take a day every now and then to mourn what you’ve lost due to your illness – whether it be your mobility, independence, a relationship, an educational or career opportunity – that’s okay. You don’t have to be positive all the time, as long as you know that you will have better days, and that you deserve them. Learn and practice self-care, and be kind to your body and mind.
10. What would you like the world to know about life as a chronic illness patient?
A: Three important things come to mind right away.
One – The “chronic” of “chronic illness” does not mean “occasionally” or “often.” It means always. It means consistently. It means incessant, never-ending and relentless. Even on good days, the illness is still there. Someone who can’t get out of bed one day, but runs to catch the bus the next, is still chronically ill. Fluctuation in symptom presentation does not correlate with the seriousness of the chronic illness.
Two – We’re doing our best. Even if my ‘best’ one day is getting out of bed three hours after first trying – I still tried my best, and that’s commendable. What might look like very little effort to someone who is able-bodied, is often something done with every bit of energy a chronically ill individual can muster. We’re always doing our best.
Three – Please don’t give up on us. It’s easier to look the other way when you don’t know how to relate to someone with a chronic illness – but please, stay present in that person’s life. It’s okay not to understand what it’s like, but making an effort to be a supportive friend can make a world of difference in the life of someone who is chronically ill. Yes, they may have to frequently cancel plans at the last minute, and might not be full of energy when they do finally get out – but never stop inviting them to places, or including them in your life. Navigating life with a chronic illnesses is incredibly isolating - it can make a world of difference to be included in even the smallest of ways.
By Michelle | @chelleraghnaid