Adapting coping skills for people with physical conditions: mental health for spoonies #2

Co-writers @health_and_unwellness and @chronically.undiagnosed92 follow up from my previous post. 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.

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

It’s easy to tell someone what they ‘should’ do to help themselves to cope with mental illness, but when that person is also experiencing a physical disability it becomes far more complex. Dealing with disability leads to many issues with mental illness to; the lack of access we have to mental health resources is astounding! There are no resources, so we are making our own. When able-bodied people experience stress because of their environment, they have a vacation- which has proven benefits. When a disabled person is stressed out because of their circumstance, they have no relief from the symptoms that torture their body constantly. No able-bodied person understand the amount of internal and external stressors disabled people have to deal. We seem to be allergic to normal life things, like sensory experiences, trips and a social life, and sometimes even the human (and everything else) touch on the skin is too painful.

We have lived with mental illness for many years, and now we also have numerous physical disabilities. Even with many years of experience under her belt, one of our psychologists has difficulty adapting strategies to meet our needs, but it can be done.

We’ll be focusing on skills taught in Dialectical Behavior Therapy (DBT) as this is the primary type of therapy we’ve both had experience with and been taught.

In DBT there are four modules. These are Mindfulness, Interpersonal Effectiveness, Emotion Regulation, and Distress Tolerance. 

Mindfulness:

We’re going to start by talking about the challenges that can be faced with mindfulness. In mindfulness the key principle is to be ‘in the moment’, so what do you do if the moment is painful or distressing? Well, in the first instance We’d consider trying a distress tolerance skill first, but you can still use mindfulness. For example, all you can think of is the pain that is overwhelming you. What if you tried turning your attention to the act of simply breathing? We’re not saying that this is easy, but it does work if you’re reaching the end of your tether. Taking a breath in, counting as you go, then holding that breath even for a couple of seconds, before breathing out slowly, making sure that you out breath is longer than the in breath will force your body to calm down, and if you can combine this with a progressive muscle relaxation it will be even better. Progressive muscle relaxation is where you tense a group of muscles intentionally, and then on your out breath, relax those muscles, and continue to do this through as much of your body as you can. It mightn’t seem to work the first time, but rewiring your brain takes time, so keep practicing. This is true of many skills we’ll be talking about. If you’re having difficulty doing a body scan/sensory based meditation but pain is getting in the way, do a body scan meditation but only focusing on body parts that don’t feel bad.

Another mindfulness skill that you can adapt to suit physical disabilities is called the five senses (if any of these senses don’t work for you, simply skip them. First, you count five things you can see, then five things you can hear, then five things you can touch, then five things you can smell, and finally five things you can taste. And then you check in on how you’re feeling, if the activity has brought your distress down at all, that’s a win, and if it hasn’t, what have you lost?

Interpersonal Effectiveness

Interpersonal effectiveness can be very helpful, as it can give you insights in how to ask for help and get support from people. When you are dependant on others for your needs, good communication is a priority.

Clarifying goals

Objective effectiveness: getting what you want from another person

• Getting another person to do something you want them to do
• Getting your opinion/ point of view taken seriously
• Ask: what specific results or chances do I want from this interaction?
• What do I have to do to get the results? Will it work?

Objective effectiveness: DEARMAN

D-describe your situation. Stick to facts

E-express your feelings and opinions. Don’t assume they other person knows what you feel

A-assert yourself by asking for what you want or saying NO to a request

R-reinforce the person ahead of time by explaining the positive effects of getting what you want/need

M-[stay] mindful. Focus on your goals, maintain your position

A-appear effective and competent/confident

N-negotiate. Be willing to give to get. Say no, but try to problem solve.

Emotion Regulation

Emotion regulation skills are designed to improve your life in the longer term; they teach you to manage your emotional responses in healthier ways. That can only be a good thing.

An easy to manage exercise is “check the facts” and its particularly useful if you have depression, and anxiety. First, describe the prompting event and chose your primary mood (with intensity of mood rating out of 100). Next, look for judgements, extremes, and exaggerations in how you are telling your story. Rewrite the story to make it more neutral and realistic. Ask yourself, “What are my interpretations of the facts? What am I assuming?” and rewrite the facts again. Rate your mood.

Another good skill is P.L.E.A.S.E.

PL- treat physical illness

E- eat well
A- avoid drugs
S- sleep well
E- exercise

Having your medical conditions managed with good physicians isn't always easy, but it most certainly helps your mood. Working on yourself is a wonderful gift that can give you amazing returns. Eating and sleeping well can also be difficult, but finding what is easiest for you to do is one of the best things you can do for yourself. Also if you have a dual diagnosis and are an addict, getting that under control helps your emotional and physical health so much. Exercise could be PT, or adaptive exercise.

Distress Tolerance

In distress tolerance, the first thing you’re taught is to STOP. That’s an acronym for a set of skills. You stop what you’re doing, you take a few calming breaths, you observe your situation, and your proceed in a way that is not going to make your situation worse. This skill is essentially about not making matters worse for yourself, and with practice it becomes second nature. You can acknowledge that your situation is awful, but that doesn’t mean that you cannot prevent it from overwhelming you mentally. It might just be the difference between being able to seek assistance or not. So, this one is highly suggested to try out. 

TIP- changing body chemistry. There intense exercise (which not everybody can do) and initiating the dive response with cold (for instance, splashing cold water on your face or pressing a cold pack on your face or neck). There’s also relaxation exercises with the vagus nerve. It can treat anxiety, depression, as well as MS and cluster headaches.

Acceptance can also help a lot. Radical acceptance is, every time you find yourself grappling with reality, you remind yourself of the unchangeable facts. “I don’t like it. I can’t change it. I can accept it” is the saying for radical acceptance. When you are in a lot of pain, and are very upset about it mentally, just relax and let go. “Don’t fight the pain. Fight the anxiety” is what I always tell myself. ACT- acceptance & commitment therapy is another good type of therapy for disabled people, who usually have to accept a lot of difficult truths about their lives. 

Another good practice that isn’t a DBT coping skill is having healthy daily habits. It helps to have at least one small and easy habit that you do consistently. For me, I find positive mantras are very helpful. Here are some of my favorites:

• I’m giving my best efforts towards improving my health
• Disability can’t take away my core identities
• I don’t need a diagnosis to feel happy and complete
• There’s no shame in using a mobility aid
• I don’t have to earn the help of my caretaker
• No matter what the state of my health, my family loves me and won’t leave
• Even when I have fatigue, I believe in my capabilities
• I can be healthy and have a chronic illness
• My disability doesn’t make me unlovable or unworthy of love
• I can have a great life while coexisting with my symptoms
• I am not causing my symptoms and I did not cause my condition
• I love my chronically ill body, its doing the best it can
• It’s possible to improve my health, I can do it!

Another option is scheduling 5 minutes of self-care, relaxation, or mindfulness at a typically high-stress time of day (for example coming home from work, or after therapy)

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