This post is part of my series for Mental Health Awareness Week 2018! The series includes articles, poems, and photo essays by many guest authors about mental health and related issues. For more information, click here!
How is your daily life affected by your health issues? Can you give a bit of an introduction about yourself?
My daily life is 100% affected by my health issues; most of all due to pain and being faint/nauseated from pain and certain deficiencies in my blood. Fainting from pain actually drastically changed my life. For a long time it wasn’t that bad… I bruised my bones a couple of times from fainting on a hard surface either at the hospital or school, etc., but when I was working for Citizenship and Immigration Canada and I fainted from pain in the office, it was no small issue. I hit my head on the concrete floor and got a concussion. They required me to get a doctor’s note that said it was “safe” for me to continue working before I was legally allowed back in the building, and unfortunately, after that, I was never hired back. Since my career goal was to work for the federal government and everything I did for four years was to reach that goal, it’s hard to even think about without feeling frustrated, angry and heartbroken.
It was also a big deal when I fainted from pain a couple of years ago because I got a neurostimulator device implanted in 2012 to help regulate my pain and other Interstitial Cystitis symptoms such as urinary urgency and frequency, and I fainted outdoors, on cement, and broke three of my wires. Not only did that leave me in increased pain, etc., for months (with some wires leaking electricity in my body and giving me occasional shocks), it required me to have an additional surgery to replace the wires that broke. Once I was on the operating table, my surgeon tested the nerves the wires were connected to and found that the nerves were too damaged to be used again, so I had to get an entirely new device (minus the battery pack) with brand new nerves, which is like starting from scratch. Since it took me a year to find a program and level that worked for me the first time around, this was horrible news. Thankfully the experience that I had helped me to find usable programs more quickly, especially since I was experienced enough to know when a program was never going to work, so I went back several times a month to see my technician and switched out the programs that weren’t helpful with new ones to try.
Because of my health issues, I have had more than ten surgeries and more than 300 procedures in the last 10 years. At times I’ve had IVs set up at home with nurses coming 2-3 times a day, been hospitalized, etc., and I am currently on 23 medications (with extra ones that are occasional). I went from spending 10-15 hours on campus at Western going from class to the gym to the food court to the library to class again and then to my friend’s place to study while watching Disney movies, to laying down in a side room at my Convocation with a paramedic and being practically carried across the stage at the very last minute. I would have done anything to get my BA and I’m glad that I made it but I did have to leave a Masters program to get an emergency surgery and I am not able to go back.
I used to be so different: a dancer, an athlete, an overachiever, a caretaker, a provider — fiercely independent. Now I can’t be those things. I am incredibly dependent — on my wheelchair, on my seat cushions and special pillows, on my medication, surgeries and procedures, on my implant, my mom and other members of my family, on ODSP. This isn’t a life I ever wanted for myself. I do the best I can, especially to be the person I once was, but I’ll never be that again and I need to accept that. I will do the best I can to create a future for myself that I will love and that will make me happy, but it is difficult, to say the least. The only thing that gets me through is being able to help people who are going through the same things I have been through, which is why I am doing this interview. If I can help even one person, it’s worth it.
Do you find that your physical ailments affect your mental health? If so, how?
Yes, my physical ailments definitely affect my mental health. It is exhausting to constantly be in pain. It wares on you like nothing else. There have been months where I have been SO much better but there are so many things that need to line up for me to get to that point again that it’s frustrating, but I carry that hope with me everywhere I go. I know it’s possible, even though it’s very rare, so I’m constantly doing whatever I can to get back there. My health issues work against each other though, so that creates extra difficulties.
My eating disorder was largely linked to having so many things I couldn’t control in my life, like my mom being sick and my abuse history, so having one more thing that I largely can’t control doesn’t help. My lowest moments are about two things – the things I have lost due to my health, such as the ability to do things and reach my goals, and the fear that I will always be as sick and in as much pain as I am during those times.
When do you believe your eating disorder developed?
My eating disorder developed immediately after I was raped when I was 14. Miraculously, 7 months later when I went off to camp, I began eating again and by the end of camp I felt healed, but then I went to visit my Granny in St. Catharines. I took the bus there because my mom was very ill and couldn’t drive and I carved out the last couple of weeks of my summer to spend with her. A 14 year old spending the last 2 weeks of her summer with her Granny in another city – that’s a big deal, at least it was in my friend group. I was so happy and excited to see her and the second I stepped off of the bus and ran up to greet her, she looked at me in disgust and said, “You got heavy.” She went on to starve me for the entire two weeks I was there and that is when my eating disorder continued.
How do your physical and mental health affect each other?
My mental health affects my physical health in mostly chemical ways linked to instinctual responses. For example, stress, which pumps cortisol and adrenaline into my body, increases my pain, especially bladder pain. Anxiety and pain causes me to flex my stiff, damaged muscles, which increases my pain even more.
My physical health affects my mental health as well. I generally have more control over this though, as an unrelenting optimist. I can always find a silver lining – ALWAYS. It takes an extreme situation to make me lose that and to lose the hope I constantly hang onto. When those situations come up, I’m usually thinking about everything I’ve lost and everything that I want for my future that I fear will never be possible. I’m always completely bedridden when that happens, usually for months on end. I created a career for myself that I can mostly do from bed, so when I’m too sick and in too much pain to even do that, it definitely triggers me. I work really hard to not let myself get to that point.
In regards to your mental health, what is a mantra/idea/thought that you have or are trying to internalize to continue fighting?
With my mental health, specifically my eating disorder, I look back to when I was recovered and remind myself that recovery is possible. I was recovered for years and it was amazing. I hope to get back there someday. I also think/say “Never give up!” to myself a lot, and “You can do this.”
What advice do you have for your younger self or others who may be in a similar position?
The number one thing I would say would be to get involved in your healthcare. There is rarely a single pill or solution to things and you can’t expect your healthcare providers to do all of the work. Advocate for yourself, research your conditions and treatment options, etc., and come prepared to do the work. I wouldn’t be where I am today without strongly advocating for myself and working very closely with my doctors. In fact, I wouldn’t be alive.
If you have a doctor that isn’t taking your symptoms or health issues seriously, ask to be referred to an appropriate specialist or find a new doctor. Show that you are responsible and can be trusted – and be trustworthy and take action. Be willing to try different things, especially when it comes to chronic pain. Most of the surgeries I mentioned were to help my pain, and some of them did in a major way, like my neurostimulator implant. Be strong and optimistic and you can get through anything. Surround yourself with people that love and support you, to be there when you need someone else to be strong and optimistic for you. It won’t be easy, but never give up. You’ve got this.