Raw Truths about Living with Chronic Illness
I’ve been sitting in heightened awareness of my chronic condition (Type 1 diabetes) recently. I’m in the process of changing my insulin delivery method and have to learn a new system and technology. I’ve been working with my coach to really be with the grief that accompanies a long-term illness...particularly, the sorrow for what might have been, and acknowledgement of how taxing it is to carry all the things I’ve had to suck up and figure out and swallow just to get through each day as best I can...without complaining, because someone’s always got it worse, right? (More to share on that in the future.)
Why? I’ve been building a program to support others in managing the mental load of living with a chronic condition. Several weeks ago I distributed a short questionnaire to gather perspectives that are different and broader than my own from others managing long-term conditions. Many of you shared it with someone in your life who fits the bill, or even responded yourself. I have been humbled to read your comments.
I have been struck by the raw truths that have been shared, and I’ve been lucky enough to have some deeper conversations with some of you, too. Again, thank you. I’ve collected some of the themes I’ve heard -- no matter the illness or condition, how long ago the diagnosis was, no matter the age or gender or nationality of the person dealing with it -- that we all seem to experience to some degree.
Here are six things I’m learning make us more alike than different:
Isolation
This one is huge and universal. Feeling separate from or misunderstood creates distance and impacts our sense of belonging, which is critical to wellness. I’m hearing that feelings of isolation are also experienced by partners, parents, adult children and caregivers. And, these feelings have been compounded during COVID, especially if the person has a suppressed immune system or is at higher risk of contracting the virus, or living in a ”hot spot.”
2. Invisibility
Whether we like to admit it or not, there’s a hierarchy of “acceptable” suffering, understanding of and support for different conditions…and boatloads of stigma.
Consider this: Someone announces they have cancer -- fundraising pages spread like wildfire, meal trains appear, support flows readily and openly. Someone announces they have chronic pain or a mental illness -- silence, avoidance, and even lack of access to treatment. Not in all cases, of course, but frequently there is a different response to different illnesses.
Many illnesses are invisible to the untrained eye, and those of us that live with them often experience skepticism and judgement when symptoms arise or treatment is required. For many managers of chronic illness, the added role of advocacy and educating becomes part of the necessary management plan: convincing family, workplaces, even medical professionals that their symptoms are real and legitimate; explaining that this is the impact of a symptom or treatment and validating the need to be off work, or to avoid crowds, or to not be able to drive right now. There’s a special skill we develop, as women in particular, seeking diagnosis and treatment for pain-related or obscure conditions especially. As one respondent shared: keep your emotions in check; be rational and pragmatic; don’t imply a sniff of mental illness or you’ll be revisiting the 1800s with labels like hysteria bandied about. Advocating becomes a full-time job with a chronic illness diagnosis. Like we need more to do.
3. Being a burden
Feeling like a burden came up as a universal worry for those of us managing long-term illnesses. No one wants to feel dependent or incapable or like we’re asking for special treatment or help or not pulling our weight. One respondent shared that it’s especially frustrating when you’ve been a high capacity, high performing, capable person all your life, and that’s diminished by physical and mental symptoms. There’s a corresponding loss of self-esteem. Feeling like a burden to our partners, caregivers, even workplaces and healthcare teams weighs heavily on our minds and hearts, and often leads to more internalizing, less expressing our needs and more carrying the load alone.
4. Appearing okay (or explaining why we aren’t) is exhausting
As someone dealing with a flare up, a symptom, or impacts of treatment that make our days challenging, sometimes we choose to lie when asked how we are. Sometimes it’s just easier to say “Fine” or “Okay” or “Great.” It is exhausting to both try to appear to be okay when we aren’t -- put on a brave face and show up for that meeting, or parent your child, or deal with your in-laws, and to alternately explain why we aren’t. No one wants to be a Debbie Downer, but sometimes it’s more truthful to say, “I’m in a lot of pain today” or “I’m really struggling with my blood sugar management right now” but often when we share truthfully, we either find that folks don’t want to hear it after all, or they question us, armchair doctor us or want to compare our condition to someone else they know. None of that is helpful. For many of us, keeping to ourselves and avoiding others feels safer and less energetically and emotionally depleting. And….cue the feelings of isolation.
5. Decision fatigue
Those of us managing chronic conditions are overwhelmed by all the extra considerations and to-do’s that come with our illnesses. Remembering to take medications, monitoring symptoms, analyzing energy levels and choosing whether or not to go out in public...to name just a few. In the case of diabetics, a study in 2014 by Stanford University found that Type 1 diabetics make around 180 health-related decisions a day, on top of all the other decisions we make as adults, like what to wear, which route to take to work, and what to add to the grocery list. Carrying this additional mental load of considerations is exhausting. This is a huge weight in the backpack of our condition that we never get to set down.
6. Big emotions
Three big emotions are prevalent in chronic condition managers: frustration, fear and grief. Frustration that things are this way; that treatment isn’t working; that side effects happen; that people don’t understand; that our lives aren’t what we envisioned them being. Frustration that I can’t work the way I want to, I can’t enjoy activities I used to, I can’t participate fully in my life.
Fear is ever-present in the life of someone managing a long-term illness. Some of the sentiments I heard from respondents are: What if I lose my independence - the ability to feed, dress, bathe, toilet, drive, speak for myself? What if I can’t live in my home any longer? What if my friends and family stop checking in or can’t or won’t help me any more? When is the next flare up or bad test going to come? What are the side effects of this treatment, and will they be worse than the disease itself? What if I develop complications? What if my life is shortened because of this? Fear can lead to spiralling thoughts of hopelessness and overwhelm, which can impact our physical symptoms and effectiveness of treatments, which can lead to more fear as we see ourselves declining.
Grief is also showing up big time -- grief for who we used to be, what our lives were like, and who we might have been, and what our lives might have been like without our condition. A respondent shared that she’s lamenting the fact that her young daughter will never know or see her mother as fully independent because the diagnosis came when her daughter was quite young. Her daughter will only ever know her as in pain and unable to participate fully in life. Carrying grief can cause more physical symptoms to arise. Oh great.
Conclusion
I realize that’s a fairly depressing list to read. It’s true.
But I think it’s important to share truthfully about what it’s like to live with a long-term condition -- the heavy backpack we can never set down. Once we can empathize with another person’s experiences we can create deeper connections, understanding and meaningful solutions. I also make up that all of us, even those without the ongoing management of a chronic condition to worry about, experience these feelings some of the time.
What do you think? Does any of this ring true for you? Has your empathy been activated by reading this, or not? We often don’t consider what it’s like to walk a day in someone else’s shoes, or roll a day in someone else’s chair, until we absolutely have to. Consider this an invitation to try.
What’s next? I’m continuing conversations with more people over the coming weeks, and have almost finished designing a group program to start in January to help with the mental load of managing chronic conditions. And in my next post, I’ll be sharing some of the lessons and personal growth and even celebrations (yes!) I’ve heard from respondents, because of their conditions.
Until then, permission to sit in the muck of it. Feel what it feels like to live with an added burden, responsibility or challenge. Grieve the life you might have had, if not for this condition. I invite you to sit with, walk with or write in response to these prompts:
I wish I didn’t have to…
I wish I could...
I’m angry that…
It’s not fair that…
I miss…
I regret…
I grieve…
Take care of yourselves and each other, and reach out if you need support.