When Pain is Chronic and Unseen
Physical pain is no laughing matter, that’s for sure. When we mention the word ‘pain’, the type of pain that often comes to mind first is that of a physical nature. In fact, unbearable physical pain that becomes chronic is a major contributing factor to suicide risk.
For people who live with chronic pain, this seeps into all facets of their life like a slow poison. It disables one function after another, switches off mental and emotional connections, and corrupts all the rules of life.
Many of these disabilities are ‘invisible’, which leads to societal stigmas. Humans are highly visual creatures after all. How do you empathise with pain that’s internal and therefore, unseen to the naked eye? Even family members can have trouble grasping the depth and complexity of chronic pain, and they’re often the people who are closest to us. What more about colleagues, acquaintances, and worse yet – strangers?
The Result of Endless Pain and Side Effects
There are endless symptoms when it comes to autoimmune and chronic illnesses. The drugs used to control them come with their own set of side effects as well. Some of these side effects are so harsh that the patient is unable to continue using them. Or they may need another medication to control the side effects of the side effects. The irony.
It’s terrifying when your physical appearance morphs because of medication or illness. Looking at yourself in the mirror becomes a traumatic experience. It’s deflating and scary when you experience strange symptoms, ones that even your doctor has no answer for.
The Surprising Thing About Pain…
But this might surprise you. I’ve lived with chronic illnesses for 20 years, and have gone through many, many pain flares. Flares that are so painful and disabling that I imagine this is what hell must feel like. Yet I actually don’t find this to be the worst aspect of living with chronic pain.
The steroids I was and am taking to control my autoimmune disorders are infamous for many reasons. I know of people who have been admitted to the psychiatric ward because of what it did to them mentally. Drugs like steroids can also cause extreme weight gain, bloating, bone loss, and many other nasty stuff. For me, the main side effects are of a psychological nature. They make me anxious-depressed, to the point where I had to fight against suicidal thoughts on a nightly basis in my youth.
In my humble opinion, one cannot deal with chronic physical pain when they’re already defeated mentally. At that point, you’re too tired to even care anymore. You don’t care about what others think about your ‘cowardice’ or rudeness. You don’t care that your friends and family might feel hurt or worried by your behaviour. It’s difficult to put this into words unless you’ve experienced it yourself.
40+ Honest Responses from Real Patients
I ran a poll on Twitter some time back, on what patients found could be worse than physical pain itself:
Which part of living with chronic illness – unrelated to the the pain itself – gets you down the most?
— A Chronic Voice (@AChVoice) May 7, 2019
That’s 214 votes in a day. Not all my polls have had such responsiveness. This led me to take it one step further and go into a little more detail, as it’s obviously a topic that needs more attention. There were a few recurring themes in the subsequent open-ended responses:
- The loss of friendships
- The ignorance or lack of understanding from friends, family and society
- Isolation and loss of a social life
- Loss of independence and career
- The unpredictability
Take a look at these 40+ honest thoughts and answers from real human beings. I hope that it helps you to understand a little more about the struggles that tag along with chronic pain like a leech.
There are Many Ways to Show Support
How many times have you, as a friend or caregiver, felt helpless seeing your loved one in pain? I found these responses thought-provoking, because many of the situations can be helped. Sure, no one can bear anyone else’s physical burden for them. But things like isolation and cognitive issues can be worked around with a bit of creativity. Know that simply being there for a loved one who’s suffering can mean the world to them. I will follow up with a post on how you can show support to a friend or family member with chronic illness, but in the meantime you might find this post helpful: 7 Ways to Be a Better Friend to Someone with a Chronic Illness (and 3 Things You Should Never Do).
Thank you to each and every one of you who contributed, lended insight and dared to be vulnerable for a good purpose. I appreciate it, and know that it will be educational for many people out there. No matter what you’re going through or how you’re feeling, remember this: you are not alone. Hang in there x
*Note: Some of the responses have been edited for purposes of brevity or clarity.
What I Find Can be Worse Than Physical Pain:
“Isolation, loss of independence and people’s ignorance surrounding my illnesses.”
– Jo Moss –
“The emotional pain of feeling rejection. I always feel I am not enough. I feel I ‘should’ be holding down a job outside of the house. People who were close to me no longer are. The fatigue and emotions I battle with weigh in addition to my health struggles. I know that my family cares and that they want me t o feel better. But they don’t understand what I am feeling or going through as they aren’t experiencing it for themselves. I give them a lot of credit for trying, still some days I feel so alone and misunderstood.”
– Laurie Harmon –
“Not having a social life, losing my friends, feeling isolated and lonely. This has been difficult for me to accept and adjust to, going from a social animal to being completely isolated. People not understanding the effects of an invalidating chronic illness, to the point of not wanting to be around you, as they think it would have an effect on their ‘Happiness Bubble’. Feeling let down by the lack of understanding and care…too many things to list.”
– Mandy Vaccarezza –
“The people who have disappeared from my life. The resulting loneliness and isolation.”
– dSavannah –
“When my Short Bowel Syndrome flares, causing me to run to the bathroom every 10 minutes or less for hours on end.”
– Jenny –
“When I lost my job to chronic illness it hurt more than the physical pain of my rheumatoid arthritis. I lost a huge part of my identity when I lost my ability to work. It took a major toll on my mental health.
I worked so hard to get into my career field and to have my career cut short at age 27 was so painful. With time I’ve adjusted, but it will always feel like a part of me is missing. Thankfully I have my blog to focus on now and have found a new way to feel purpose. However, I’m not sure the pain of losing my career will ever really be completely gone.”
– Rachel Tait –
“People not believing I’m in pain.”
– Tonya –
“The isolation and loneliness. Sometimes it’s not even physical isolation but being in a roomful of people and feeling totally alone because of the pain. In an interview recently for disability benefits I was asked whether I saw many people or had visitors. I was really sad to say that I didn’t, which I found confronting. It made me aware how small my world has become because of chronic illness and pain.”
– Rhiann Johns –
“Being fat and not being able to use my brain to its full capacity!”
– Sophie –
“Being too weak and subject to injuries keeps me from joining in activities with family and friends. That is emotionally painful.”
– Carole Griffitts –
“Fatigue and brain fog.”
– Bonnie –
“For me, the alienation that chronic illness/pain causes is often worse than the physical pain itself. It’s difficult to be with someone, yet know that they don’t truly understand. I could be in a room full of 100 friends and still feel like I’m stranded and forgotten.”
– Jordyn C. –
“Brain fog and mental health problems.”
– Sarah Johnson –
“The unpredictability of it all. Living with chronic illness has caused me to view human connections in the same inconsistent way. Effects of my condition has made me unreliable. Therefore, I believe people will only show themselves to be untrustworthy and not constant in my life.”
– Janean Overman –
“My loss of concentration and cognitive abilities.”
– Amanda M –
“When questioned if the symptoms are just ‘part of life’, especially when it’s the people that are close to you.”
– Nick Winder –
“Knowing that my friends and family don’t really understand. They are kind, but they don’t know.”
– Gail C. –
“Multiple days in bed missing out on everything happening around me, especially time with my kids.”
– Erica Carrasco –
“I find the loneliness that I often experience is the most painful part of being chronically ill. I spend hours at a time alone while normal people attend work or school. I start to compare myself to others and I make myself sick (literally). I try to keep myself busy, and my brand and blog does just that.”
– Ashley B. –
“The psychological toll that the pain takes on most chronic illness patients including me.”
– Collin Wong –
“Payback. For everything I manage to do, even when I pace myself, there is payback. Even a week after being active, I might still be paying a price.
After years of learning to listen to what my body needs, I still want to do more than I’m capable of. The realisation that I can’t often hits me hard as if I am new to living with chronic pain. But I’ve been living with it for most of my life.”
– Elizabeth Sirrell –
“Having to let go of people who don’t understand, the ignorance you face from others, and not being able to physically do the things you did before.”
– Amanda –
“The constant fight to be recognised by doctors, family and friends as being disabled, and having the authority over my own body. Nobody knows me (or what helps) better than I do.”
– Beth –
“Having to live in poverty in order to get government assistance such as low income subsidy that is extra help for my meds, medicaid, food stamps and more. I wish that I could be a productive member of society.”
– Alex Flipse –
“The depression and anxiety along with the pain is hard to cope with.”
– Tammy Whitaker –
“Depression that distances us from friends and family.”
– JacQueline Roe –
“Not being able to keep up with the pace of life – feeling so inconsistent. Feeling weak and useless.”
– Catherine –
“The lack of understanding from family members and coworkers.”
– Mary Caelsto –
“I’ve found that the feeling of missing out on life, not being well enough to be included in activities and events, and having to explain how I’m doing, can all hurt more than the physical pain. It takes a huge emotional toll to know that the only reason I can’t always go out is due to my body and chronic symptoms.
Friends don’t always understand my situation, which makes it even harder. I struggle to continuously express how I’m feeling to them because it changes over the course of each day.
Also, I simply don’t have as much energy or stamina as I used to. I’ll need my friends to understand that our hangouts will look different now, more laid-back and thoroughly planned out because of my new physical needs.”
– Jasmin Floyd –
“The unpredictability – can I do the thing or not, will the thing kill me or be super easy? Will this sneeze be a sneeze, or something akin to a surprise cameo of Green Arrow’s arrow through my right ovary? ?♀️”
– Bridget –
“Not being able to carry out normal, everyday tasks. Making me feel unaccomplished.”
– Laura Spoonie –
“Anxiety over how bad pain may get.”
– Nira Hyman –
“The disconnect between what my brain wants to do, and what my body is capable of doing.”
– Elizabeth Bulfer –
“When people don’t take you seriously but belittle your illness and pain, dismissing them either as pretense, or as just a little something that’s ‘between the ears’.”
– Varpu –
“The voice in the back of your mind that nags at you at your best, and screams at you at your worst, telling you that you should be strong enough to overcome this, why aren’t you able to push past this, do more.
That voice telling you that you just might be wasting your only life, and that you are failing at everything. That vicious little voice that’s born out of ableism and societal pressure to ‘hustle’.
A voice made out of every single time someone close to you disregarded your illness or didn’t understand. The moments when this voice gets going feels more painful and more damaging than physical pain ever has.”
– Gwen –
“Emotional pain of feeling alone, feeling like no one else really ‘gets’ it. Those that ‘get’ it are those that are in my online chronic illness groups.
I am sitting here in bad pain tonight and there are people around me, but I feel very alone and disconnected.”
– Laurie Ann Harmon –
“The feeling of aloneness when facing a period of disease flare with no foreseeable end can be mentally painful to bear.
It’s easy to feel like the (usually) healthy people around you can’t truly understand the sacrifices you’ve already made to the dreams in your life. And the potential sacrifices that come to mind when you realize that you may never fully recover, or that you may be on a path of lifelong decline in health.
It can be a very painful process to reimagine a new, more limited landscape than the life you had imagined for yourself. Often there’s a loss of freedom and independence.
The positive is that going through this painful process can open our eyes to the huge variation in what it means to be human, and to really believe that everyone deserves equal rights and opportunities.
In the case of invisible illness, it has helped me to view every person I interact with as an individual, and to wonder what burdens they bear, and how I can make their life easier and happier. This can be as simple as holding a door, or listening to someone vent their frustrations with a non-judgmental ear.
Turning the mental pain into something useful and positive is the best way for me to begin to heal, feel less alone, and like I’m living again.”
– Chronic_Denial –
Note: The article is based on each individual’s own experiences, and nothing should be taken as medical advice. Always be sure to check with your doctor before you start on any new treatment or protocol.
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