The Big Questions You Face After a Chronic Illness Diagnosis


I was 22 (and a half) years old when I was diagnosed with lupus SLE and fibromyalgia.

I was running eight to 10 kilometers a day and at Ryerson University full-time studying Psychology. I ran a charity I had founded called Young Ones, which provides free mental health services to youth in financial need struggling with addictions and other mental health issues. I volunteered, I was part of a research team at Ryerson and U of T working on a paper that examined, funnily enough now in hindsight, coping with chronic disease and maintaining a fulfilling quality of life.

I did a lot and I loved it. I was stressed, but I balanced.

I was taking a summer course in creative writing when the pain started. I have retold this story to so many doctors that I lose count, and every time it’s like a short movie that plays over in my head.

 

It started in my hands. Some days it was so bad I could not pick up a cup or pencil, so I learned other ways to function. Thinking it was stress or some kind of arthritis that would pass. Thinking, I must be taking on too much. I should just slow down. Then, it spread to my knees. In time, I had to stop running. Then, I stopped walking to school. I began carrying ice packs to class and propping my knees up on the chair in front of me, while people stared as I iced my knees during class. I was determined not to let it get to me. Maybe it was a long-lasting sports injury? Then I stopped going to class altogether. I could barely walk around my apartment.

My boyfriend at the time forced me to go to the doctor, and they put me on Celebrex as a temporary solution. The first doctor said I for sure didn’t have lupus – said I was “far too young.” That doctor made an emergency appointment for me with a rheumatologist but I did not make it there. I ended up in the ER first, in the infectious disease unit (because they thought I must have meningitis or blood infectious gonorrhea, because it’s never lupus).

I finally made it to the rheumatologist. My blood work, complex as it was, took a long time to return, and I waited weeks for answers. I had moved into my parent’s house by this point and was bedridden. I needed help feeding myself as I could not cut my own food, go to the washroom or bathe on my own. I would not eat at times out of embarrassment and difficulty with asking for help. As I’m sure those reading this know, it’s embarrassing not being able to do things for yourself and getting used to asking for the help you need.

Then, on August 14th, 2012, I found out I had lupus. My mother said it must be some mistake and we drove home from the doctor in silence, interspersed with interjections from her about how we would get a second opinion because it was certainly a mistake. I did not have lupus, she said valiantly. I felt sad, because I knew it was true. I was happy to have an answer. I was happy the weeks of agony were over; the sleepless nights and moments of arguing over whether or not I had Lyme disease or serum sickness or RA or the myriad other things they tested for.

The time period following the doctor, while that moment when I found out is clear as day, is very unclear. I remember her saying I would need counseling for this sort of thing, and then shuffling us out of the office. I remember the doctor’s unusually high heels, her too tight clothes, and the yellow paint on the walls. Yellow was an odd choice for a doctor’s office, I thought. I remember taking a bath and floating in the quiet part under the surface of the water where the world goes silent.

They started me on Plaquenil as I have a seizure disorder and am allergic to Prednisone. I went into a fog and stayed in it for a long time. I was at a total loss as for what to do with this new life I had been handed. I was angry, but didn’t realize it. I thought of all the reasons this could have possibly happened. Because I had stood too far or too close to the microwave. Because I hadn’t recycled enough. Anything and everything became a possibility but nothing made sense. I had so many questions and nobody to answer them, and still, to this day, I have lots of questions. As the years have passed, I’ve garnered some answers here and there through trial and error, reading and practice. But I’ve learned primarily that sometimes there are no answers because there just aren’t any.

The first question that frustrated me after my diagnosis was just how long is this all going to last? When exactly will I get better? And how much better? What do I have to look forward to? And who can answer this for me?

Nobody could. Everybody gave me a different answer.

The first set of doctors and counselors I saw at a speciality lupus clinic suggested I begin to leave school and find a new career, because as they stated, my life would change so radically I wouldn’t be able to keep up with my old lifestyle. I didn’t believe them and tried my best to maintain my life anyway until I could no longer keep up and had to, as they suggested, start to make the necessary changes.

Other doctors and counselors suggested I go on living life as normal – because lupus doesn’t stop people, they said. They promised I would still have a normal life. My family held firm to this line as well. They still do. And I think a balance of these two ideas is what is important.

Recognizing that changes need to be made because things are going to be different is an important step to take, and even mourning to an extent the losses you will experience because of your diagnosis is paramount.

I tried hard to grasp on tight to my old life to no avail. This was not helpful and only made me compare myself to everyone around me who had the same old life and was healthy and still living as though nothing had happened. This just upset me. Until I accepted to myself that something really had changed I couldn’t move on. This was step one.

Do not let yourself get stuck at this step, and do not get caught in the trap of thinking that because your health has changed your life is over. There is a difference between having to make changes to work with your health, rebuilding or adjusting and giving up on your life. It is important to recognize it and move on, but not give up or get stuck in sadness. This is hard when there aren’t many answers, or the answers are conflicting, everyone has different advice, Google is scary and people blame just about everything for what is wrong with you.

I’m not sure what the truth or answers are for other people with chronic illness, but I learned to accept that for me, the answer to “when is this going to get better?” is, maybe for today, and maybe not – so enjoy it while it lasts. Relish the good times. Having a chronic illness is riding waves of highs and lows and becoming a great surfer because of it. You have to be prepared for flares, have canned food and extra toilet paper and all the supplies on hand. You have to be flexible. You have to be emotionally ready for the cancelled anniversary plans and have a movie on backup and be OK with that (and after all, it’s just as nice to cuddle on the couch). I’ve learned that the days and weeks which come where I am better or more productive are really awesome and make up for the bad ones. I may be healthy for a long time, who knows, and that time may be starting tomorrow. But what I’ve learned is to be OK if that doesn’t happen.

This is important because getting down on yourself and depressed on top of a chronic illness can only exacerbate things physically. Everyone says it, but staying positive really is the most important thing.

This all ties in to the big question everyone has when they first find out. Just how much better am I going to get? What if this treatment doesn’t work? I’ve tried so many treatments. I feel like a guinea pig. When will something help? Etc.

My mom used to say to me that I had a part in how much better I got, and it infuriated me. I thought she was trying to blame me for my illness, and I would always retaliate with some snarky comment. I have come to realize however that she is right. What I eat does make a difference. Pizza is great and so is mac and cheese and it really does help when I’ve had a bad day, but I have more energy and less flares when I eat quinoa and kale. This does not mean I have all power to make treatments work or prevent flares, though I fully respect those of you who swear by that. If you have figured that out, more power to you. Please email me, I’d love to know more.

It also matters if you believe in what you are trying, be it a new biologic drug, chemotherapy or massage therapy or physio. I went for stem cell surgery roughly four months ago. It has a high success rate with fibromyalgia but they could not promise me success with both lupus and fibromyalgia or total success with the lupus alone either. With my case, they could only really guarantee some improvement for both conditions, or some moderate success with one or the other if the treatment was a success. I had given up at this point. I was on Methotrexate, Plaquenil and a concoction of other treatments that were not helping and I really did not believe I would ever feel better. This was my last shot and if it didn’t work I didn’t know what I was going to do with myself. It had to work. There was no second option for me. I put all my eggs in that basket and went for it. I was terrified – I think more than I have ever been in my entire life.

Before I went into surgery, the doctors sat me down and told me that in every single case, the energy the patient applies to the treatment affects the outcome. If they have a “positive intention” then they will likely have a positive result. They told me to be hopeful and send out thoughts, literally, of what I wanted for my life after the surgery and of how much better I wanted to be. I came out of the OR walking, no cane. I am still not sure what made the surgery so successful, but I know for a fact that being positive helped. If something won’t work it won’t work, but it never hurts to be open-minded and hopeful when trying.

black and white photo of a woman in footie pajamas walking with two canes

It also helps to generally stay positive about the future. Nobody likes to read Google or the web forums about symptoms. They are terrifying and generally get everybody worked up, no matter what the case is. For example: About three weeks after my diagnosis I went on a study date with a guy from one of my classes, shortly before I took time away from University. I was unwell during the date, unsurprisingly, and he asked me about what was going on. I told him vaguely about being sick but tried to hide it. He asked about it, and I mentioned it wasn’t a big deal. When I told him it was lupus he Googled it. He read that people can die from it. It went mostly downhill from there.

Your own mortality is a big thing to consider, even if it isn’t something you are immediately facing. Because you may have never considered it before and now, for the first time, here is something that could kill you, or that could be the cause of your death. Or, even if that never crosses your mind, you’ll very likely meet someone who will ask you if you are going to die from your illness or if you are dying already and you need to have an answer on deck about your illness and death rates and how healthy you are. Nobody likes dealing with that.

There’s also the question of relationships. There are lots of questions. “Is this too big a commitment for someone to make?” “Is it too much baggage?” “Too much of a burden?” This one has really plagued me. I try to settle on the side of , it’s only as much of a burden as you let it be. Otherwise I lose my mind.

My mom always told me that God created everybody equal. Whether or not you believe in God, that makes a lot of sense. Think about it for a moment, and think of a couple of people you know. When I think of it, I think of how many people I used to compare myself to who in hindsight have struggled just as much as I have but in different ways. I may not have been able to see it at the time, but that’s because people usually just share their successes.

Out of all the six years it’s been since I was diagnosed, the ups and downs, and the good and great and amazing and awful and hellish, when I look back on it, it’s been mostly beautiful moments and laughter. The only really awful moment was when I was diagnosed, and all the confusion that followed. Because I had no answers, I didn’t know how to cope with the sickness and pain and medications and newness. It was a lot of relearning and figuring out a new way of balancing that worked for me so that I could do things a new way that worked all over again. Nobody tells you that when you go to the doctor. You have to figure it out on your own. Anything awful that came after that, I knew I could handle.

I will never forget shortly after finding out I was ill, and collapsing on the floor, crying by the fridge, wondering who could answer these questions. The problem seemed so insurmountable. When would I get better, or when would it get easier? Would it ever? Etc. And if you feel like that now, I just want you to know it will. It takes time, and it does take work, but it will get easier and then you will look back on those first few moments and think, phew. It’s all downhill from here.

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