Friendships, in general, aren’t always easy, but they are in no way as complicated to maintain as having one with someone who is chronically ill. Chronic illness friendships require a different level of commitment.
Being friends with people diagnosed with fibromyalgia, autoimmune arthritis, lupus, multiple sclerosis, ME/CFS, etc. can be difficult if you aren’t prepared for the complications that our diseases create.
We will try your patience, annoy the heck out of you, and sometimes make you wonder if we are worth putting up with.
In this week’s post, I outline four of the many ways our chronic illnesses complicate friendships to give our current and future friends a better understanding of what to expect.
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Our Illness has Made Us Unreliable
Before chronic illness, I was the queen of reliability. Seriously, I never canceled and was always early or on time. No one had to worry if they asked me to do something because I always followed through.
Little by little, chronic pain, fatigue, and brain fog crept into my life, and the less reliable I became. Not wanting to disappoint anyone, I pushed my body to do as much as I could. Having my body mimic stroke symptoms and spending a week in the hospital was my wake up call.
To decrease how often I canceled, I began limiting my commitments. While being non-committal and extremely careful about what I commit to, cancellations are still unavoidable. The reality is that even when my symptoms and pain appear to be well managed, there is always the chance of an unexpected or unpredictable flare.
Chronic illness friendships have to be flexible. There needs to be shared respect and understanding that we will only cancel when there is no other option to follow through. It is not uncommon for friends and family who make us feel guilty for having to cancel when our bodies are too weak to go out, our eyes too heavy to remain open, and our brains too foggy to think to see less of us. We can only do so much to prevent flares and need our friends and family to understand that there are no magic pills that will make us “normal.”
Chronic Illness Friendships are Exhausting
Nurturing a friendship with someone who has a chronic illness can be tiring. Friends and family tire of us canceling, showing up late, or having to reschedule. Listening to our health problems may feel like listening to a broken record. At least our friends and family do not have to deal with it once they hang up the phone or go home. For the chronically ill, the nightmare never ends.
Friendships, while desired and needed, are exhausting for the chronically ill. You have no idea how much energy it takes to carry on a conversation when your head feels full of sand, your brain feels like someone has hidden your words, or are dealing with sensory overload. I know I can’t be the only chronic pain patient who while suffering from noise sensitivity, has wanted to seal the lips of a jubilant friend who is excitedly sharing their news with super glue. It’s is not that we aren’t happy for our friends, but that at that moment, instead of hearing their words, all we hear are nails on a chalkboard.
The average person hangs up from a phone call or arrives home from an outing and can move on to their next activity for the day. These very same activities drain the chronic body. Our bodies often require that we rest for the remainder of the day or for several days.
We are Forgetful!
Brain fog is real! Chronic illness pain is more than a physical feeling. It affects our entire body. Muscles, bones, joints, nerves, our skin are affected.
It’s like living with a broken circuit board. We forget words, names, and even what the heck we are even doing at the moment. I have actually told my daughter that I need to text someone, picked up my phone, and then forget what the hell I was doing. After checking the weather, I may remember why I unlocked my phone, or it won’t happen until I hear from the other person or my daughter asks what their reply was.
Pain has an awful effect on the brain.
To be friends with someone with a chronic illness one has to accept:
- that we may read your text the second you send it, yet not find the words or energy to reply for days or weeks.
- we aren’t purposefully ignoring your calls.
- we may occasionally call you by the wrong name.
- that a conversation may turn into a game of charades when we struggle to find our words.
Chronic Illness Friendships Come With A LOT of Baggage!
The chronically ill literally come with a lot of baggage. Emotional and actual baggage not only weigh us down, but it also requires a strong friend that may have to occasionally have to carry our bags.
Anyone who doesn’t have a chronically ill friend needs to understand that we could fill a shipyard full of shipping containers with our emotional baggage.
In addition to some of the common forms of emotional baggage, we carry years and decades of medical abuse with us. My medical abuse stems from having serious symptoms dismissed, being told my pain was in my head when in fact it was very real, having doctors write prescriptions for medications that my chart clearly indicated that I was allergic to, forcing me to be retested for illnesses that several doctors before them already diagnosed, and surgeons swearing post-surgery pain was not their fault yet was later proven to be by another.
I and many other chronic illness patients, are not the people to talk to if you want to be reassured about our healthcare system. This isn’t to say that there aren’t any good doctors, but that most really do not know how to treat patients with one or more complex chronic illnesses.
This baggage haunts us beyond our own experience and can be triggered by another person’s death because of medical negligence.
Another form of emotional baggage we carry is emotional trauma. This baggage is created by various factors. Not all chronic illness patients have supportive spouses or family. Some spend just as much time describing their pain and limitations to their family as they do their doctors. It is awful to be doubted not just by medical professionals, but by people who say they love you.
There was a time when everyone, except for my husband and children, believed that my abdominal pain was in my head. Doctors referred me to psychiatrists and family members agreed that nothing was wrong since tests weren’t showing anything. Had it not been for my husband and children, I would have lost my mind. I will never forget that glorious moment when I awoke after surgery and was given the reason for the pain that had plagued me for years. Turns out I wasn’t crazy after all.
Trust is broken and rarely regained. Relationships with the people who didn’t believe my pain was real, were changed forever. How could I ever fully trust people who thought I was faking pain, a pain which turned out, could have killed me had it gone one any longer.
I jokingly refer to my bag as a diaper bag. Yes, it is a literal bag that I carry with me whenever I leave home. Inside it is a plethora of items that I use to tend to and calm my chronic illness symptoms. I don’t need everything all of the time, but not knowing what symptoms will spike or when it is best to bring it all.
In addition to my on-the-go pain bag, leaving home often requires a mobility aid. The type of mobility aid I bring along depends on what my current physical status is, how long I will be away from home, or the amount of strength needed for the outing.
Chronic illness friendships are not impossible, nor do they have to feel tedious. Fun can still be had as long as both parties can accept the illness, how it varies, the modifications needed to be made, and are ready for an adventure. Understand that your friend may fall, shit themselves, or forget words and think about how you would want to be treated if you were in their shoes. By the way, if I crap my pants and laugh, it is okay for you to laugh with me!