One of life's greatest challenges is coping with pain. This aversive sensation is frequently compounded by fear, particularly when the source of the pain is unknown. Similar to aversive emotions like anger and anxiety, the purpose of pain is to motivate. Pain motivates the individual to withdraw from damaging situations, to protect a damaged body part while it heals, and to avoid similar experiences in the future. By understanding our pain, we perceive it with less adversity.
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. https://www.ehlers-danlos.com/what-is-eds/
(c) Susan Spitzer 2017
A serious physical illness can affect every area of life: relationships, work, spiritual beliefs, how we socialize with other people. Effective coping has been shown to, not only promote good mental health, but have a healthy impact on many disease processes.
Some coping can include involvement from mental health professionals. However, there are many simple coping strategies that can be accomplished by individuals on their own.
A Doctor With Chronic Illness
“I’m a Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew.“ was published on The Mighty.
Written by Amy Stenehjem, M.D.
I’ve written this article to help educate those who want to learn about chronic illness. It is written from
my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent ﬁve years of my life homebound due to chronic illness.
I want to spread awareness so that friends, family, employers, coworkers, and health care professionalscan better understand chronic illness. My hope is that an increase in awareness will help strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness.
About Chronic Illness
Chronic illness is a disease, condition, or injury that can last years or a lifetime and is typically not curable, though in some cases it may go into remission. It can vary in its severity, with some people able to work and live active or seemingly “normal” lives; while others are very sick and may even be homebound.
Many people with chronic illness have an invisible chronic illness. The severity of their symptoms is not clearly noticeable, which may lead to a lack of understanding and support from doctors, family, friends, and coworkers.
1. Nobody wants to feel sick.
In all my years as a doctor treating patients with chronic illness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to ﬁnd answers and treatment for their overwhelming symptoms.
2. Many doctors don’t understand chronic illness.
For years, doctors were under the misperception that some chronic illnesses were caused by depression or anxiety and the only treatment available for these patients was psychiatric care.
Despite medical evidence disproving this perception, some doctors are “set in their ways” and do not truly understand chronic illness or how to appropriately address it. Therefore, patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen.
3. Being unable to work is not a vacation.
Those who are not able to work due to chronic illness are not “on vacation.” They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing, etc. They are often homebound, too sick to leave their homes except for doctor appointments.
Have you ever been stuck indoors for a couple of days due to bad weather or a temporary health issue? Remember feeling annoyed with the inability to leave your home and be active? Now imagine not being able to leave your home for weeks or months at a time. Frustrating, right?
4. Chronic illness can trigger many emotions.
Chronic illness itself can change the biochemical makeup of the mood control center in the brain. In chronic illness will often have to “pay the price” for engaging in an activity and then require days, weeks, or even months of recovery.
Those with chronic illness may need to rest often and may have to cancel events last minute. This does not mean they are lazy or trying to avoid activities. Once fatigue kicks in, there is no other option other than to rest. It’s as if the body “hits a wall” and can’t go further, no matter what. To better understand the fatigue and limited energy of a person with chronic illness, read this helpful article about the spoon theory.
Have you ever been stuck in bed for a few days from a really bad infection, surgery, or hospitalization? Think back to how that felt. You could barely get out of bed and simple tasks were exhausting. Now consider feeling that way every day, all day, for months or years?
7. Pain is a common symptom in those with chronic illness.
Those with chronic illness often experience severe pain, including headaches, joint pain, muscle pain, nerve pain, back pain, and/or neck pain.
8. Brain fog is extremely frustrating.
Brain fog is frustrating because it is a diﬃcult symptom to describe so that others understand its impact. Brain fog is a cognitive dysfunction common in chronic illness, which can include issues with word ﬁnding, concentration, and recall. Those with brain fog often know what they want to say, but can’t ﬁnd the thoughts or words to communicate eﬀectively.
9. There is a greater risk of dangerous infections.
The immune system in those with chronic illness may be overactive and instead of attacking infections the chronic illness immune system wastes time and energy ﬁghting the body’s own organs, joints, nerves, and/or muscles. Many people with chronic illness are on medicines to suppress their overactive immune systems and consequently, need to avoid being around sick people. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness.
10. Certain foods can aggravate symptoms.
Certain foods may aggravate the symptoms of those with chronic illness. Common culprits are gluten, dairy, sugar, soy, yeast, alcohol, and processed foods. These trigger foods increase inﬂammation which can cause a signiﬁcant increase in symptoms which may last for hours or days (sometimes weeks).
Because so many of these trigger foods are in our diet, it is often diﬃcult to pinpoint which foods aggravate symptoms and staying away from favorite foods can be a challenge.
11. Sensitivity to smells is common. Certain smells including perfumes, colognes, cleaning agents, and smoke can trigger headaches, brain fog, nausea, and other symptoms in those with chronic illness. Also, some of the medicines used to treat chronic illnesses are low-dose versions of chemotherapy drugs. The sensitivity is similar to that seen in those who are pregnant or on chemotherapy and have a sensitivity to smells.
12. It takes a lot of eﬀort to manage chronic illness.
Those with chronic illness have to be very regimented to make sure they get adequate rest, avoid trigger foods, take medications at the correct times, and avoid ﬂares. It is understandable that sometimes they just want to feel “normal” and eat some pizza or stay up late, even if they know they will “pay for it later.”
Despite struggling with grief, isolation, and often debilitating symptoms, those with chronic illness (and their caregivers) warrior on. They ﬁght daily to be able to understand their bodies and to do things others take for granted. They are often surrounded by a society that does not understand their challenges, and therefore, is unable to provide adequate support.
You can make a big diﬀerence in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.” This is why it is so important you are taking the time to read this article. Thank you!
More from The Mighty:
The Perfect Thing My Doctor Said
My doctor sat at his desk facing his computer as he read through my chart and got updated on the various specialists I’d seen and the tests I’d had done since my last appointment with him.
He turned around and said, “So pretty much you’ve become a professional patient.”
It’s true. I’ve seen several new specialists lately and am waiting to see a few more. This is a good thing because it means that after years of trying to politely convince my doctors that there are other things going on, I’m finally getting somewhere. I don’t yet know exactly where that somewhere is, but I’m happy to be on my way all the same and I’m thankful for the understanding and committed doctors who are helping me get there.
But it’s still hard. I’m tired of waiting months for appointments to come up. I’m tired of playing trial and error with new medications. I’m tired of just not feeling well day in and day out. I expressed this frustration to my doctor, although I knew there was nothing he could do about it. What he told me, however, actually did help.
He said, “I know. But you’re doing a good job, and I think you’re handling everything really well.”
It was the perfect thing to say. There was no pressure on me to put on a brave face. There was no expectation that I should be upbeat and optimistic all the time. There was no dismissal with false hope or empty consolation.
Instead, there was awareness of the “chronic” part of my chronic illness. There was permission to be realistic and an understanding that I was weary. But it was also good to know that even though it felt at times as if I were stuck in place, weighted down by my illness, I was actually still moving forward.
And because of all that, I also felt encouraged. I was doing a good job. I could keep doing that.
It was exactly what I needed to hear, and I can’t help but think that maybe you need to hear it, too.
So I want to tell you that you’re doing a good job.
Maybe, like me, you’re facing a chronic illness or disability. When you feel like you’re running around in circles searching for a diagnosis, you’re advocating for yourself. When you struggle through difficult treatments and procedures, you’re giving yourself a chance at a better future. And when you find yourself facing a feeding tube, a wheelchair or any other medical device, you’re working within your limitations to be as well as possible and live a life as full as possible. You’re doing a good job.
Maybe you love for and care for someone with a chronic illness or disability. When you’re breaking down the walls of your comfort zone in order to learn to care for your loved one, you’re working to accept your new normal. When you’re putting in hours of planning and preparation to help your loved one carry on with life as normally as possible, you’re proving that a challenging life can still be a meaningful one. When you set aside your exhaustion, pain and fear to help your loved one through those feelings of their own, you’re teaching them how to be resilient. You’re doing a good job.
We’ve all got something. It doesn’t even have to be illness or disability. We all have things in our lives that are hard.
Sometimes we get defeated. Sometimes we’re angry at our circumstances and feel sorry for ourselves. Sometimes we compare ourselves to others and get jealous of those who appear to have it easier. And that’s all OK, because other times our spirits triumph. Other times, we choose to laugh instead of cry and choose to be grateful for what we do have instead of feeling bitter about what we’ve lost. Other times, we reach out and take everything we’ve learned through our struggles to help someone else face their own.
We don’t have it all together all the time. We’re not supposed to. But we do what we can. We do our best.
So don’t be afraid to give yourself some credit and acknowledge your own strength. Don’t be afraid to give yourself the affirmation that you need. Whether you’re thriving or simply just surviving, you’re doing your best.
And you’re doing a good job.
(c) Susan Spitzer 2017
(c) Susan Spitzer 2017