In this post, Xan reflects on the weight of chronic illness, and role of emotions, expectations, and caregiving in the experience of chronic illness and emotion management.
In my last post I wrote about the fallacy of people thinking I cannot carry things because like many people with cystic fibrosis (CF), I am very thin. “But it’s heavy!” strangers will say. “You can’t possibly carry it all by yourself.” If only they knew. I manage just fine with heavy material objects, provided they aren’t especially large or unwieldy. No, the heaviest burdens I carry are those unseen to others.
Knowing the data, knowing people with your condition have an average life expectancy in the high 30s range, constantly explaining “well it’s really a bimodal distribution differentiated by access to care and a bunch of contextual factors” to wide-eyed people whose eyes well up with tears because it’s too hard for *them* to handle to know you are sick. Now *that’s* heavy. I spend so much time explaining things that people could Google, so much time bending over my phone responding to messages asking if I’m okay when what people really want is for me to make *them* feel okay. My neck has begun to hurt from the weight of my head literally dragging me down.
So now I’m holding my phone at 90 degrees to my face, stretching my neck and thoracic muscles, asking myself tough questions about why I’ve always swallowed whole the assumption that it’s my responsibility to do the emotional labor of coddling people in my life under the guise of helping them get educated. It’s never the people closest to me who ask for this. They know better, or they wouldn’t have gotten so close to me in the first place. Asking how I am is kind and affirming. Using that question to spend the next 30 minutes gobbling up all the emotional support you can from me about how hard my diagnosis is for you and how much it scares you…is not. It literally weighs me down.
Being open about your fears is a tremendously good thing in and of itself. It’s where you seek support in coping with those fears that matters. This isn’t black and white; it’s a question of nuances. Ring Theory offers a good way to understand socially affirming flows of emotional support, using a simple algorithm of “comfort in, dump out”. The basic idea here works like an earthquake. The person dealing directly with the challenges at hand (terminal illness, loss of a loved one, sexual assault, etc.) dwells at the epicenter. Then shock waves radiate around the epicenter with progressively lower intensity as distance increases. A life partner feels them most intensely, followed closely by other family members who are close to the person. Then come very close friends, then other friends and colleagues in a much bigger ring, and then casual acquaintances.
I’m a pretty textbook long-surviving CF patient in many ways, including both all the issues I do experience and what has heretofore been more minimal involvement of the pancreas. Whether I have any pancreatic involvement remains unknown, because I definitely have some bizarre endocrine symptoms these days. I just keep coming back to the fact that I had low-positive results on a sweat test *and* so many of the core clinical signs of the disease and nobody gave a damn. Why was my case dismissed when my parents kept fighting so hard to get me medical care? Why did I have to be treated in fragmented little pieces by specialists focused on this or that organ? Why did I have to undergo surgery to rebuild mucous membranes that could have been reasonably well protected by drugs that were already on the market? These questions pull me down like heavy stones.
I see a CF specialist tomorrow for the first time in my entire 33 years of life and these questions spin through my mind constantly. And I feel the lingering fear that this doctor won’t believe me either, that I’ll now be caught in a terrible limbo of knowing I need a specific type of care yet being just as unable to get it as when I had more questions than answers. Maybe I still have more questions than answers. I spend most of my time trying to answer other people’s questions, though. And it has exhausted me so thoroughly that I feel empty inside, as if my disease consists more of the need to justify it and reassure others than of its terrible physical mechanics, which I wind up with little cognitive space to consider. I go to bed each night feeling as if the day has drained all the life from me, questions racing through my mind in the darkness that surrounds.
I don’t have any real answers. I wish desperately that I did, but I don’t, and I often feel as if I’ve failed the people in my life because of that. All I have is a lot of lost time and an opportunity to do things differently with a doctor who stands a chance of understanding my case and my needs. So…to be continued. I’m excited about meeting with the specialist. I try to Be Positive in all things. But there’s so much beneath the surface, and it feels exceptionally heavy today. So I strive to grow more proficient and comfortable in asking others to shoulder a piece of that burden, not my grocery bags or guitar equipment. For it’s the invisible weights that bring us down the hardest.
I am 44 yrs old and have had unique signs of disease my whole life. I have a biology degree, so I’m lucky that I enjoy reading medical literature and can relatively understand it. I have fallen through the medical cracks myself. As you said, one specialist says “nope, not me” ad sends you to another dr who says the same thing. 25 yrs I have been very sick with some periods of less sick. 25 yrs I’ve been fighting with my drs, insisting something is much more wrong with me than what my tests show. Over the last few years, through contemplating suicide while my children were still young enough to not remember me and my husband still young and beautiful to find a new wife, I ve had to become my own research specialist. Drs are so busy and swamped with patients every 15 min. They are doing their best just to get through their workday…probably getting burned out very quickly. It’s easy for me to blame them, and I do often, but that got me nowhere. So I’m left with being a huge burden on the ones I love (currently I spend 75 to 90% of my time in bed or laying flat). My kids are 23, 11, 7, 6. I miss family outings, dinners, cub scout awards, school plays and fairs, field trips, soccer games, gymnastic practice, time with any girlfriends, dates with my husband of 17 yrs, etc….. I am missing out on life and STILL have no diagnosis that makes sense! We are a military family for 20 years. It’s a wonderful community but my husband retired due to my inability to take care of my children or myself. He does almost everything! He still has to work but he no longer leaves for a year at a time! I recently realized WHY none of my drs have caught on to what was wrong with me. In the military life, you move often. If you’re a dr in the military, it’s double for you. Most of the time the drs are VERY young and just doing their 4 years in the service to pay off medical school (which is an insanely smart way to go the dr route!!!!) However, this affected me. In 17 years in, my primary doctor change approx every 6 month to a year on average due to one of us moving. So every year I had to start all over with a new person. (If I had a dr longer, I rarely saw them due to deployments they were on so your relegated to their PAs or nurses!). 17 years of describing my odd afflictions with probably over 70 drs and specialists, all I’m mostly told is that it’s psychosomatic and I need mental health help. I know I’m not crazy. Yes I get severely depressed…..because I am chronically ill and cause those I love tremendous disappointments they know are not my fault.
I have had my colon removed for bleeding ulcerative colitis, thyroid cancer, 2 ft of ileum removed. I’ve been diagnosed with fibromyalgia and cluster headaches, osteoarthritis and possible early onset of RA. I do not move from my bed not due to pain, but complete lack of energy. Like a car that was running on fumes and now is OUT of gas. So I lay, watching my life go by, watching my children’s experiences from a bed, a chair or pictures other moms take of my kids and sweetly send me. And they wonder why I prefer to due sometimes. I tend to get caught up in my own pity and think “if only they had a new mom who could play and laugh and run” or for my husband “if only he had a new wife to go camping, hiking, make dinners for him, help him get kids ready for school or check their homework, or even make herself pretty and go out to dinner for alone time and adult conversation”. My family loves me and needs me alive but the stress it puts on the caretaker is unimaginable. I HAVE NO, ZERO, NONE, ENERGY except to keep my heart beating, lungs going and brain functioning at very low settings. I do have shortness of breath at times, lung dr says I’m perfect. I have heart pain and palpitations, heart dr says I’m fine. Severe orthostatic hypotension most days, nausea, movement/pressure sickness I liken to car sickness. I get pancreatitis often with bowel obstructions and have steatorrhea (way too much fat in stool) yet missing 8ft of intestines my GI says I’m perfect. No malnutrition or short bowel syndrome. I’m unable to control my blood sugars and swing hourly between hyper and hypoglycemia. This is causing mild seizures the er passed off as anxiety. Now, when I sit or stand, my feet, then legs, then hands turn extremely cyanotic. Rheum says it’s not him. Vascular surgeon says not him. Yet the bp in one of my thighs was 197 compared to 120 in my arm. My triglycerides, chol, etc are way high. I pee blood on occasion and have oxalate crystals. And my thyroid cancer metatasized into some lymph nodes 3 yrs ago. I have chronic insomnia due to a completely flipped circadian cycle and restless leg disorder. I have periodic paralysis that the er says oh it hypokalemia here’s a potassium pill. I sweat so severely I was diagnosed with hyperhydrosis and often smell like ammoIA or lije strong pinesol! Yet, as I was told last month, by looking at all my blood work that I am THE picture of perfect health. I have severe adhesions matting all of my organs, interstitial cystitis, mild scoliosis, my hair and nails don’t grow, autoimmune blistering roseacea on face…..I give every new dr a packet telling him all this. Their response was ….well mrs. Williams, sometimes we just won’t ever know the answers and there is no rest reason why you are so sick. I said oh hell no! I WILL find the root cause.! You are what I’ve found.
Steadily researching the genetic diseases that run in my family (when I have energy to think), in the last few years I’ve made awesome discoveries through my own children oddly. My 23 yr old has bleeding UC too and severe sugar cravings due to lack of energy. 3 yrs ago my 6 yr old was rushed to er after I brought him to dr complaining of excessive thirst and peeing constantly. His insulin levels were 1. A specialist came in and said he’s fine. That just happens sometimes. That child has extreme constipation. And last year I noticed my 7 yr olds feet and palms after leaving the tub. They were all white and blister like peeling. Aquagenic wrinkling!. I put all my intestine symptoms, thyroid issues, my sons isulin issues, my dad has crohns so did his dad, his 2 brothers had UC, his nephew had diabetes and celiac, my mom has seborrheic dermatitis, soft enamel with lots of cavities, severe sugar eating and chronic sinusitis, her mom has diabetes, her dad died of liver cirrhosis and her 2 yr old brother died of pneumonia . I also have soft teeth and so does my brother and youngest son!
So, tell me. Am I the picture of perfect health? I am waiting for 23andme results now. Just has amino acid tests done. I am completely missing 4 of the 20 essential AA and deficient in 7 more. Told new drs this. Let’s see what they do! My suspicions were a glycogen or lysosomal genetic storage disease or fabry disease (because I got my period at 10 and had 15 chancre sores in my mouth monthly until 19. They stopped and then I got UC!!!) But now Atypical Cystic Fibrosis fit’s all the weird symptoms in my family. We’ve alays been a very skinny family until we got sicker and took prednisone. My dad us morbidly obese now with severe coronary artery disease. His 2 brothers died of that.
If u have any suggestions, please respond.
Doreen, thank you very much for sharing your story with us. You’ve certainly endured a lot of challenges, as have your family members. I empathize deeply with how you feel now.
I do have a few suggestions! Getting tested for CF would be a good idea as a starting point, especially given the aquagenic palm wrinkling you’ve noticed in your family. About 84 percent of CF carriers have this characteristic, so it may be that your family has a condition called Cystic Fibrosis Metabolic Syndrome. This is a variant form of CF in which the lungs are not affected but the GI mucosa and pancreas are. It usually shows up in people who have only one gene variant for CF on one side of their genome and a “normal” CFTR gene on the other side. Heterozygous people with classic CF usually have a combination of one variant on one side and a different variant on the other.
You may also want to ask your doctors about Sjögren’s Syndrome. It’s an autoimmune disease of the mucous membranes that impacts the whole body, but doesn’t impede chloride transport the way CF does. Some of the symptoms overlap and some people with CF also have SS, which can develop when the body starts treating the mucosal tissue as foreign. This has been the case with me.
You may want to contact one of the locations of Mayo Clinic, which has a very active program of research and care on autoimmune disease. Likewise, the NIH Undiagnosed Diseases Project would probably take a lot of interest in your story. At the same time, just focusing on the physical symptoms and diagnosis is only part of the equation. I would strongly encourage you to think about the resources that you can make use of in your community for emotional and social support. Living with a chronic disease is always exhausting, but that is doubly true when you were struggling to get good information about how to care for yourself.
Please feel free to reach out to me any time! You can add me on Facebook if you would like to keep in touch–my handle is xan.nowakowski.