With an elephant on my chest, medicine on the night stand and my inhaler at my side, I reflect on the ebb and flow of chronic illness and relationships. Being chronically ill doesn’t mean that you’re constantly at the worst state you could be, but it does mean your health is never perfect.
In previous blogs, I’ve talked about having a good support system and be open about everything that’s going on when you’re chronically ill. Many completely healthy people do try to empathize with our chronic illnesses which is a sweet yet impossible gesture. When I say “I can’t breathe,” it doesn’t mean that I choked on my water and had a coughing fit for a few seconds and during that time I couldn’t breathe. It actually means that I can’t breathe through most of the day. Not being able to breathe is exhausting. I monitor how often I use my medication, try to stay less active and I focus on how I’m breathing to avoid visiting the emergency room.
Because I’ve not been feeling well, I recently canceled meeting friends to celebrate an important milestone birthday and it really got me thinking about how we all live with chronic illness. Sometimes the best made plans are not possible to keep due to a flare up, infection, exacerbation or you’re just out of the energy to do it.
I had been at my most sick from 2008 – 2009 with my asthma. I went for my last rehabilitation for my lungs in 2009 and I had to work hard to get back on my feet. I went from not being able to climb a flight of stairs to hiking the mountains in Davos, which was a big deal for me. My lungs and I struggled together and we conquered a lot together. If you are a close friend of mine and walked this path with me then, you know what a scary and difficult time it was.
When I was back on my feet, I found myself single for many reasons. Oddly one reason included him not accepting me healthy. He liked me weak and ill. I guess I didn’t have the energy to either stand up for myself or say what I wanted. I had a job change which put travel into my life and he didn’t like me away from home. I had a hard time with the end of a marriage but continued to get better and started loving life again.
Eventually I knew meeting someone new would happen, and it did. I met someone who was pretty great and we got along until a few months into dating I had come down with a cold. I didn’t go out with him when he wanted to go snowshoeing. I stayed home because I knew it was what my lungs needed, I couldn’t breathe and needed the rest. At the time, he didn’t say anything but after that we drifted apart. Once we sat down to talk, one of the things he remarked on was whether or not he would want to be with someone who was chronically ill and how that would impact his life going forward.
Not Good Enough
Naturally, at that point, I didn’t make a big deal about it but I felt like he stabbed me in the stomach with the biggest machete he could find. I felt so jaded that he would actually use something I can’t control against me! I didn’t ask to be chronically ill and didn’t really believe it made me someone who couldn’t be loved.
Having a chronic condition isn’t a choice. It’s not like a menu where you can have a soup and salad with mild fibromyalgia on the side. We have a condition that becomes our life partner whether we like it or not! It’s chronic illness and it freaking sucks!
I think that it’s possible to change a bad habit in any relationship if the will is there but it’s impossible to simply snap a chronic illness away! Believe me, if I could wake up tomorrow and not have asthma, I’d be the happiest person.
To this day, I haven’t forgotten that conversation because it taught me a few things.
- I will never be able to be “the best” person for everyone – I have to be the best person for me which will enable me to be the best person for the closest people to me, especially my daughter
- Not all men are like this, I just had this bad habit of liking a certain selfish character. This crosses over into friendships as well. Let these people go!
- Sometimes the heart should listen to reason and rationale and shut off when things like this happen – that’s still on my wish list. If anyone has ideas, please share!
At first, I felt like a failure. I had come out of a difficult marriage, managed to get back on my feet from being so sick that I almost died and then some wanker gives me the impression I’m not ‘good enough’ because I am chronically ill!? I was so proud of myself for working hard to become healthy again.
- I lost the weight I gained from taking prednisone, I no longer needed that medication regularly to keep me breathing. This was a huge thing.
- I worked with my lung doctor to have the right medications
- I was walking every single day for at least 45 minutes to increase my cardiovascular strength (I was hiking during my rehabilitation but where I lived in Germany had hills not hiking mountains)
- I kept positive thoughts (negative stress causes asthma attacks)
- I was the mom my daughter needed again
- I was surrounded by amazing friends who supported me
- I worked hard at my job and earned the money my daughter and I needed to survive
I felt great under my circumstances! Then along comes this guy and says he doesn’t know if he could picture a future with someone like me who has a chronic illness?! To his advantage, I was not strong enough to truly react as I normally do. I did end up having an “eff-you” moment or twenty and I had some other choice words. He hurt me deeply and that was not something I felt I deserved. It took some time, but I moved on.
I recently read in a book that you can’t write about something like true love when you’re in the middle of that emotion. Your relationship has to have ended so you can feel everything about true love in order to express it. That’s how I feel with “Let Life Rule.” I’m coming out of the darkest points and it’s time to open up.
I have recently begun to work with my feelings about chronic illness and pain. Now I’m ready to talk about the hard side my life. I’m ready to share how I feel about having the right people in my life. We need to surround ourselves with an incredible team of people who will accept us all the time. Accept us when we’re not well and when we feel great. What is that called? Unconditional love? True friendship / love? Friendship and relationships are not perfect, they ebb and flow like our chronic illnesses do but they can still have unconditional support and love to keep us strong. I definitely apologize when I lose my cool and freak out at my daughter, partner, friends or family. I’m probably one of the worst chronically ill assholes out there. But, I’ve found the right people who love me at my lowest. I can only stress that you must find the right people in your circle! They will give you the strength you didn’t know you had!
The experience I described above left me with the question “will you still love me tomorrow?” You know that song from the 1960s? The song about that perfect moment with the worry that when tomorrow comes it will be different. When I’m not feeling well and I cancel plans at the last minute with friends or family, I find that I ask myself that every time: “Will they still love me tomorrow?” Even though I know I am loved by the right people I still worry. I have an incredible daughter who stands by me through everything. She’s my rock and my reason to work harder to be healthy everyday. No matter where I’ve moved, I’ve managed to find pretty incredible people in this world (Canada, Germany, Switzerland, America) who know that I might be down today but I’ll be back (yeah, Arnie) tomorrow!
Articulate how you feel!
I realize that chronic illness is not easy to live with when it’s your illness and that it’s difficult when your loved ones have that helpless look in their eyes. The one thing that we, as chronically ill people, should ask for is love and understanding. We have to talk to our loved ones. I have said it in other blogs, communication is so important.
Articulate how you feel so that “you will be loved tomorrow” and there won’t be room for the people who are so perfect that your chronic illness seems like a disease they can catch or something disgusting to grow old with. It took me a long time to tell people how I feel (healthwise) and it’s definitely a vulnerability for me. For many years I considered my lack of health a weakness so I hid it as much as I could. I realize now that it’s not a weakness.
With my recent chronic pain, my relationship with my partner had more difficult than loving moments. We have been able to work through them and today we have the relationship we had at the beginning of our time together. That came through many hours of communicating and me learning how to say how I feel. I’ve been very lucky!
To my friends and family who stand by me – I love you even if I don’t say it. I appreciate your strength and comfort when I need it, your laughter and ridiculous messages when I’m at home sick and you’re out on the town. I appreciate you for accepting me as I am and for making me smile! I know that I am loved today and tomorrow…