Living with chronic illness sneaks up on you. It can move so slowly you don’t even feel its creeping presence. One day you realize that you are doing fewer of the things you enjoy. You don’t go out as much. When you do, you go without your partner. Vacations and even holidays at home begin to feel overwhelming. You have to pay bills, so you focus your energy on going to work. There is a constant worry in the back of your mind. At the end of the day, you don’t have much left over for the thing you should be doing: caring for the sick person you live with.
Living with a loved one who is enduring a long-term chronic illness is taxing. The vast majority of people, thankfully, will never experience it. That also means that they can’t relate to the unusual and unique situations that you experience. It’s natural, too, for those on the outside to focus on the one who is ill. What the rest of the world doesn’t seem to understand is that you, even with your health, are living with all the fallout, limitations, and stress that chronic illness brings on top of a “normal” life.
That’s how it started for us. We were a fairly normal modern family. My wife had a good job and I had an ok one. We were raising a blended family of four kids, three from her previous marriage and one we shared. It’s hard to pinpoint when it happened, but gradually we became aware that she wasn’t feeling well on a regular basis. Missing work became routine because she was experiencing debilitating pain at random times in random joints.
It got so bad she eventually took a medical leave, which turned into a disability diagnosis. Along the way, we did what anyone would do. We went to the family doctor, who referred us to specialists whom we consulted.
Medical specialists certainly are a mixed lot and the twelve or so we have visited over the years live up to the description. We have met some incredibly caring and compassionate doctors. We have met some that take their time, and others that seem rushed. Some have welcomed us and empathized, others have taken nothing more than a sterile, clinical interest in what we are going through. One was one of the absolute rudest professionals we have ever met.
It’s like medical school completely removed his capacity for empathy. After waiting six months to see this particular specialist (a normal wait time in Ontario), we had high hopes. We thought maybe, with the symptoms from the previous years, this might be the doctor who cracks it.
We were shown into the exam room. The doctor walked in and didn’t introduce himself. He did a quick and cursory examination of my wife’s joints and mobility. Then he turned, sat down and began to read her chart. Without even making eye contact he said, “I don’t know what the problem is, but it’s not in my area of expertise. You are probably just overweight.” Then he got up and left. For the record, she weighed in at 138 lbs.
Thanks for nothing, pal. Oh, and Fuck You.
No matter how long this goes on, which for us is over a decade without a diagnosis or effective treatment, there is always hope that things will get better. Our family doctor said he had hope. There was even hope that it would go away as fast as it appeared. While the hope strategy hasn’t paid off yet, the past decade has been a slide, sometimes slowly, sometimes rapidly, into worse health, worse pain, and more doctors who don’t know why.
Turns out, if you are watching someone live like this, hope comes in finite quantities.
We were once blessed with an opportunity to attend the Mayo Clinic, and we will be forever grateful for that. We spent a week in Rochester, MN receiving fantastic compassion and care. In the end, they had to admit defeat, too. “It is definitely something,” they agreed, “but we don’t know what.” That was crushing.
Between the canes, gel cushions, an endless rotation of ice packs and meds, a scooter and now wheelchairs, people are always asking how she is doing. Sometimes they really care. Other times, they are just curious, or worse, snooping. I can usually tell the difference. Sincerity is always appreciated. Gossip mongers, however, are a constant reminder of how small and petty people can be.
Inevitably, people want to offer their two cents. Tips, advice, things to look into, you name it. Guess what? We have been to naturopathic doctors, the Mayo Clinic, more specialists than I have fingers (with more to come) and our family doctor. We have been to physiotherapy, massage, chiropractors, dieticians, counsellors, pain clinics, occupational therapy, CBD clinics, allergists, the gym, and swimming pools.
So, please take the hint. No matter how well-meaning you are with your college degree or vast experience in sales, I’m not really interested in hearing your medical advice or about the shaman that lives in the desert who can heal with his hands and a cactus needle. The medical journey is our journey. Stay out of it, please, unless we invite you into that conversation.
We have the normal stresses of everyday life, too with kids off to college and teens trying to navigate the end of their high school careers and figuring out their futures. We have money worries, career worries, parental worries, and all the stuff that makes up normal modern life. What people don’t get is that I also have to see someone I love suffering every damn day.
Every. Damn. Day. And there is nothing I can do about it. Nothing.
And then there is the random judgement that we encounter. Why are we using accessible parking? Why are we taking up a scooter at the grocery store? Schools, doctors, and others assume you are checked out because you didn’t make it to a conference, appointment, phone call or get paperwork back on time. People make judgements about your parenting choices because you have to carefully pick and choose your battles with the kids. By the way, they have had more years of their lives with a mother fighting chronic illness than without.
Point of fact, just recently we had someone give us parenting advice. They knew better than we did. And then, a few days later, actually told one of my kids we were bad parents, that we needed to change how we were raising him.
For the record, all of the kids are finding their way. All of them are kind, generous, and compassionate. None of them steal, vandalize, or cause problems around town. All of them spend most of their free time at home, even on weekends. We do stuff together when we can.
With all that has gone on in their lives from experiencing a divorce to now also living with chronic illness in their life, I’m pretty damn proud of how they turned out. And I think, actually, that my wife and I had something to do with that despite all the extra stuff we get to deal with.
Loss takes on a different meaning for me as well. Have you ever noticed how our society ranks loss? Anywhere from “that’s terrible” to “get over it.” I think that way too, and sometimes I feel guilty because I can’t conquer my anger and my sadness about this situation. I struggle with feelings of guilt because, you know, she’s probably not going to die and others have it “worse.” Terminal illness, drug addiction, homelessness, malnutrition, and poverty are all “worse.” Actually losing someone must be horrible.
What I am finally beginning to understand is that watching someone suffer every day is horrible, too. Having to lose someone by inches, over the course of years isn’t a picnic. Psychologically, you are never able to move through the stages of grief for what you have lost because every day, the loss is there again. There is no closure. Closure means ultimate loss, no closure means it never ends. Take your pick. Neither is much of a choice.
The second thing I am finally understanding is that I am not alone. There are many of us out there, living, loving, and caring for someone who just can’t get well. Health concerns tend to be private. People don’t want to complain too much or be too open so we rarely find each other.
I am hopeful that at least one person in a position similar to me will find this story. I hope they find that our experiences share some big points of commonality. If you are living with chronic illness, too, what you need to know is that you aren’t the only one out there. Knowledge of someone’s health tends to stay behind closed doors and likely only family and close friends have any idea what’s going on.
Yet, there are others like you.
If you feel guilty because the tank is empty when it comes to your job, your kids, your commitments, and yes, even your sick partner, that happens. You’re not a bad person, you have just had too much crap thrown your way. Get mental health help. If you can arrange to do it as a couple, I recommend it. If you can only get it as an individual, that will help too. If you can do both, that is a great combo.
Don’t get me wrong, counselling won’t fix anything, but you might find new tools which provide new ways to think and cope. It’s not a solution for the burden you feel, but it’s the idea that things today will be just a little bit easier to cope with than they were yesterday.
That’s a taste of what it’s like living with chronic illness. You should also know that my wife has not only approved this little story but proofread and contributed to it. So, if you read the whole thing thinking, “How can he say that in front of her,” you got your preconceived judgment wrong, bucko.
I don’t want anyone to feel sorry for me or her. That’s not the point and it won’t help, anyway. What will help is more people assuming that they don’t know what others are going through, that they don’t know what is going on behind the scenes and then begin to treat others with respect and decency. I don’t know, but maybe that’s my new hope and dream.
I feel everything about this. It was incredibly hard being in this situation. I hope you can find that diagnosis someday and some real help. In the meantime I hear you and I’m wishing for the best for you.
Life is not fair when you have to fight just to live it every day. Cruelty and judgements. That’s what my husband and I must face every single day. Envy- hey, why aren’t you at work? And then the memory of how much I used to enjoy my work and that no matter how much I wish I could go back it is not a reality for me. And my husband – always at my side, always advocating and telling others how no one in the health care system has any compassion at all for an issue you can’t “see”. This is not what we expected – this life of trying to get from one day to the next, praying not to have to go to see a doctor – who’s office won’t answer your calls or worse, an ER who has flagged you as a frequent flyer no matter how valid the concerns and almost every person there treating you like you are worthless. I can see how people give up. It’s a fight every single day. And speaking as the family member that is chronically ill, you wonder if everyone would be better off not having to deal with all this, including you.
I get it. Your story has a ring of truth to it and says the things that few others have the strength, integrity and inside knowledge to say. Thank you.