Relationships and Chronic Illness: an Interview
Conducted by Steffie Lones
Loneliness is a common symptom of chronic illness. The thought of finding a partner whilst being chronically ill can be a scary thought; I want to reassure you that love whilst being ill is possible. Being in love with someone who is chronically ill is equally scary; again I want to reassure you that a loving relationship under these circumstances is possible.
Alex and I met at school back in 2009. We were friends for years and have been in a wonderful relationship since April 2015. Life has definitely been a rollercoaster for us since then, but thankfully this hasn’t stopped us from loving each other! I frequently get questions on how Alex copes with my complex medical needs, and because I know other chronically ill people can be hesitant about being in a relationship I decided to interview my boyfriend. Thank you to my fellow chronic illness warriors who sent in questions!
What surprised you about dating someone with a disability?
Well it wasn’t very present when we started dating [Stephanie: I had health problems for years before we got together. However in 2016 I suddenly got very ill and my health has been bad since then]. It kind of just… Happened. I’m quite surprised that I cope with it most of the time.
Have you had to change your perception of the world from what you learned from your relationship?
Drastically. Before we got together I was quite… Casual about life. I never really bothered thinking about a lot of these things. I never had giant struggles in life other than bullying so things like mental health honestly didn’t interest me that much. I just never encountered anything related to it. I have always had super dark humour and I still have that, but I am definitely more careful with what I say since I know it can hurt people more than I thought it could.
Do you worry about the future?
Not really. I am generally fairly optimistic, despite some people around me expressing more worry about my future than I seem to do. To quote Dr. Ian Malcolm from the ‘Jurassic Park’ series: ‘Life, uh, finds a way.’ I generally live by this rule.
Did you know a lot about chronic illness before we started dating?
Absolutely nothing. When I used to think of chronic illness, I thought of people in wheelchairs with little-no life left in them basically waiting till the day they die. That is obviously the extreme, and as I learned, there is so much more between healthy and chronically ill than I used to think.
What is one thing that surprised you about my symptoms?
The largest thing was the mental problems. In terms of physical problems… I’m not a very active person, so you don’t ruin my day by forcing me to stay indoors. The mental part is much harder. People are complicated. Sometimes I suddenly get a text with ‘I don’t feel well’ and I just have no clue as to what to do with that.
To come back on the physical part: I think the strangest thing is how quickly it changes from a minute to minute basis. She could be running around and jumping the one minute and nearly collapsing the next minute.
Sub question to 5: So you would say the most surprising part is the randomness and the suddenness?
Was it a challenge adapting to my needs?
Not really. I generally help people whenever I can anyway. I just ‘go with the flow.’ If she needs a lot of help on a given day, so be it. I might not always like it, but I’ll do it. That’s life.
What is one positive thing you have learned about people with chronic illness?
Their optimism! When Stephanie got into her ‘spoonie warrior’ groupchat, I was super worried it was going to be a place where people share their sad stories, effectively just making each other sadder. When I feel bad, I would feel worse if I heard sad stories. The opposite is true! Stephanie gets a lot of support out of it and feels good when she helps other people who are feeling down (which I have too). When we went to Paris we met one of her friends, and she was a great person! Positive, friendly… The type of person you’d want to call your friend.
Do you ever advocate for me?
Well I’d always stand up for [Steffie], of course! I will say that it completely depends on context.
How has your attitude towards people with special needs and disabilities changed because of our relationship?
Not too much, because I never ran into it much before. I think the main thing I learned is that ‘you’ll feel better tomorrow, no need to worry about it now’ doesn’t work for everyone. I never told anyone to just ‘man up’ or whatever, but it is something I’d tell myself because for me it works. ‘Different people have different needs’ or ‘there are no universal solutions’ would probably be my biggest lessons.
Subquestion for 10: And what about people in wheelchairs or with invisible illnesses?
I think that attitude hasn’t changed much. I think I had a pretty healthy attitude towards those things before we got together.
Can you think of an example of a time where because of my chronic illness you had a good laugh?
Stephanie had to do a so called ‘tilt table test.’ [Stephanie: I had a tilt table test a few months ago to be tested for postural tachycardia syndrome aka POTS. I tested positive.] When she was being strapped up, I really had to contain my laugh because she basically looked like Hannibal Lecter V2. After our little cannibal was strapped up and the table was tilted… it was the most boring thing ever. I expected it to be super eventful (I envisioned a tilt table test would be like strapping a person to a wheel of fortune), but it was sadly a lot less fun. We did really laugh when I told Stephanie I was expecting this.
And lastly: any advice for people who are thinking about getting into a relationship with someone who is chronically ill?
Do you love said person? Yes? Go for it. It’s that simple. You have to put up with a lot…. Random crying, sudden hospital trips, saying something entirely normal and getting yelled at, long waits in waiting rooms etc. But if you love that person, it’s worth it.