Mental illness and physical health conditions: mental health for spoonies #1

This blog is dedicated to every person who has a physical and mental health diagnosis. This is a mini-series on mental health when you have a chronic illness or physical disability. The goal is to raise awareness for how high the chance of suicide is, and the fact that mental illness when you have a chronic condition is inevitable. And, also very importantly, to give coping skills to and visibility to those who need it.

While everybody reading this blog knows, chronic conditions usually come with a mental health diagnosis, and that's normal- but when your symptoms are so severe they have taken over every part of your life and drained your quality of life, it's easy to see how you would have suicidal thoughts. The sad thing, is it never has to get that bad, but the medical system will make you wait until you are ready to end it all. My pain could have [relatively] easily been stopped, but all the doctors that denied care made my life impossible. When my 9/10 back pain was just starting to set in and was a week old, I saw a pain specialist and I begged him for pain meds because it was the worst thing I had felt in my entire life and I'd do anything to make it stop and that thought stayed with me the whole 2 and a half months while I had untreated pain so bad I wanted to end it all.

TW: talk of mental illness and suicide
I would like to start this blog by saying I'm not an anomaly. 20,000 people with chronic pain commit suicide annually, which is higher than the government's number of opiate overdoses. There is a clear connection between chronic pain and chronic illness (people with a lower quality of life due to a health condition) with depression, anxiety, medical PTSD, and suicide. There's a substantial risk of suicide for people with 2 or more conditions- and most chronic conditions have comorbidities. People with CRPS, the most painful condition, have many risk factors of suicide such as depression and severe pain, with 74.4% of patients being high risk and 25.6% of patients being low risk. At least 40 patients have committed suicide after being taken off of opiates. Traumatic brain injury survivors have 9 times the suicide rate as an able-bodied person. HIV/AIDS and sleep disorders double the suicide rate. People with epilepsy have a suicide rate that is 22% higher than the national average. One out of every 26 men with arthritis attempt suicide, and 4.3% of women have made attempts too.

People who have migraines with auras have high rates of depression and a 47.2% chance of suicidal ideation, and a 13.9% risk of suicide. Out of all suicide victims, 21.3% had hospital-treated musculoskeletal disease. The likelihood of suicidal ideation was 26.9% and the risk of suicide was 48.0% among patients with fibromyalgia. Hypertension, back pain, cancer, congestive heart failure, and chronic obstructive pulmonary disease all increase the suicide rate of the patient. Cluster headaches, nicknames the suicide headache, is so painful it increases the suicide rate of patients. In the ictal phase, 64.2% of people report passive suicidal ideation, and 35.8% of people report active suicidal thoughts and urges. The suicide attempt rate is 2.3% of patients with the suicide headache. Before you condone the war on drugs, check the facts, and recognize how much it is [literally] hurting our community.

Every life is a life worth living! Here is a list of global suicide helplines:

https://ibpf.org/resource/list-international-suicide-hotlines

Did I have mental illness before my health conditions: I had my first symptoms of mental illness as early as 5 years old, and my first symptoms of chronic illness at 7. Right before my health started to get worse with new symptoms (that I don't think are fibro) was after I finished intensive mental health treatments and I was the happiest I had been in maybe my whole life. I believe if I would not have gotten sick I would have done so much more personal development. I'm bitter about my sickness ruining my mental health.

Chronic Illness- When I talk about being a spoonie/ having chronic illness I’m talking about my daily symptoms that only feel like a real disability when I have a bad flare

Chronic illness and mood: a significant amount of spoonies have a diagnosed mental illness. Fibro causes anxiety, depression, and mood swings. It also impacts the amount of discomfort we can handle when other things like pain and sleep deprivation makes me have a short fuse. A lot of people have trouble understanding that it’s not like any illness they have heard of. It’s tiring explaining it but I usually I’d rather talk to them about how my condition affects me than tell the name and to look it up. Its not up to the spoonies to educate everybody on what chronic illness is like. Chronic illness is also unpredictable, so theres a lot of psychological pressure. I am constantly nagging myself, wondering if I'm "pacing" my activities well enough, or if I did too much and triggered a flare? With my fibro issues I always place on myself, which is just a big ball of stress in my mind.

Disability- When I say disability I’m talking about my hard to treat symptoms (mobility, extreme pain), which imposes very strict limits

Disability and mood: when I had no quality of life I was full on suicidal, and I hated every second of every day. I was deeply bitter, discouraged, and hopeless. There’s a great amount of fear wondering if you have a condition that can majorly impact quality of life. I had no amount of patience. I was angry at life and sometimes took it out on others. Also gives me bad moods that make me hate my body and blame myself for my symptoms. Our self esteem is also impacted when we don’t do as much as we are used to. The details of disability make people uncomfortable and they say we are “too much” and “too negative” but we are just being realistic and deserve to have space to talk about our issues.

Lots of coping skills to help with mental illness are inaccessible. Mindfulness can be helpful, but I’ve had some bad experiences with meditations. On some bad days, the pain is so bad when my head isn’t full of distractions, feeling calm and in my body was agonizing so I had to stop. Meditation was so painful sometimes that I would cry and do relaxation exercises to distract myself from the pain I felt. 

Some involves exercise from casual to very intense; I used to love taking long walks to chill out, but eventually became housebound when my health reached an extreme low. I’ve done workout regimens just fine, but this last year everything felt so different. When I was doing yoga daily I should have been able to slowly increase my length of session. My body was uncooperative and I had to constantly reduce the amount of time I was able to do yoga. By the end, even 5 minutes had me so exhausted I was shaky and couldn’t walk after that session.

Other mood-boosting skills (like music and sunlight) aren’t sensory friendly. I was so upset when I couldn’t even listen to music and I had to lay alone in the dark with earplugs in- those were dark days [pun intended]. I also had generally less energy and more brain fog, so it was hard to educate myself and have it stick. I was lost in fog and didn’t feel like I could make any permanent change. My lack of energy made it extremely hard to be mindful of my own thoughts and challenge them to decrease the frequency of negative thoughts I experience. This is probably the most important skill in recovery, and it’s incredibly hard to do it. 

When isolation and pain are perpetuating each other it’s a very bad time. Sometimes I get maxed out on phone time and need a break. However, when I’m in deep emotional distress and I want to talk to my friends, I need to talk to people even if it will cause me pain. That new pain makes me even more upset over the new symptoms (like hand tremors that prevent me from holding the phone). Note- I know there are speech to text and similar apps to make phone use easier but I haven’t gotten set up with any particular app yet.

Social anxiety and mobility aids: the first few times I used my cane at home, in the fall of last year, I kept thinking “I can’t believe I need this now.” When I got my wheelchair in December I thought “This can’t be forever.” I always told myself that since it was only temporary, nobody had to see it. I was hiding it, because I was ashamed that I needed a cane at age 19. I cried my eyes out watching the movie “Theory of Everything” because I had such a connection with Stephan Hawking, a young disabled physics student with 2 canes like me! At the time I was using 2 canes because just one wasn’t stable enough. Out in public where nobody knew me, I’d have to use my cane. I hated it, everybody stares and I always get one person saying “what’s wrong with you?” before “hello” and I’m sick of it. I’m over every person who thinks that me being different is in an invitation to ask intrusive questions! Like I need another reminder of my disability…

By the time I needed a wheelchair I’d become a true recluse. I would hide my mobility aids; it was so scary to worry about all the judgements and questions. It was always hard having all the questions and stares from strangers but what was worse, in my opinion, was people close to me knowing. It made my disability real, so I was avoiding that. It was hard to explain to somebody how I became less and less able to walk over a year. Part of me was afraid of their reactions, but a big barrier to me being accepting was my unwillingness to talk about my disability. Eventually, I had to come out to the public as disabled, because I needed a fundraiser to help us pay for treatment and supplement my lost income.

A lot of things haven’t worked for me, but don’t give up hope. Seeing a therapist and starting on medications is a good option for some (like me). Chronic pain counselors are great for people like me. I like to say affirmation and mantras multiple times a day. I do gratitude more than once daily too. And having a good, understanding support network is one of the best tools for surviving. I have asked for help and received it from some people. Others like Carrisa (Los Angeles roommate, best friend) and my parents offered the help. I’m grateful for all the people who came to help me when I couldn’t take care of myself. When I get caught up in the guilt of having others help me with my burden, I stay present by being grateful for the help received, not guilty. I also get safe physical therapy exercises to do at home, so I still get “exercise”

A great article about suicides from the "war on drugs"
https://medium.com/@ThomasKlineMD/opioidcrisis-pain-related-suicides-associated-with-forced-tapers-c68c79ecf84d