A constant claim from many people with chronic pain conditions is that nobody can understand the pain unless they have experienced it themselves. On a superficial level this is obviously true, at least in that people who don’t have chronic pain conditions, have not felt what it is like to have chronic pain.
But I want to investigate this idea a bit further. Seems to me understanding is a different ball game from experiencing. Do I have to experience a burglary myself to understand it would be distressing to have all your precious, irreplaceable photos and belongings stolen? Do I have to experience winning an Olympic gold medal to understand it would make you feel excited and proud? Do I have to be dyslexic myself to understand that it would be frustrating and confusing trying to read and write? Do I have to be a sheep to know I wouldn’t want to be eaten? No. No, no, no.
Six years ago, when I was first wrangling with specialists over diagnoses of cluster headache and trigeminal neuralgia, the picture was complicated by several extra symptoms that didn’t fit. The neurologist did not recognise what he was seeing. He wanted all my symptoms to fit together like a jigsaw puzzle from a box with the same picture on the lid.
After a year of trying to put these mismatched pieces together and discovering that pieces of autumn trees can’t be squeezed into a picture of an ocean-going schooner, I ended up seeing a rheumatologist. That’s when we discovered we weren’t dealing with two jigsaw puzzles, but four, and the rheumatologist sorted all the pieces into the right boxes.
These extra two jigsaws, Ehler’s Danlos Syndrome and Sjogren’s Syndrome, are also rare conditions. Like cluster headache and trigeminal neuralgia, they are often unknown by GPs (primary care physicians), are difficult to treat, and difficult to manage. So many diagnoses like this are a little like trying to do a jigsaw puzzle when there is no picture on the box at all.
At that point, I didn’t understand much about my jigsaws. I had names, lists of symptoms, and prescriptions for meds. I knew how they manifested for me, and swiftly gained a clearer picture of how much they always had, simmering away under the surface. With help from Google, and my husband’s research skill at sniffing out useful articles, we gathered information to help us understand.
But I didn’t only want to understand what my conditions were. I wanted to learn how to live with them. Because I have to – there are no magic cures. So I also learned about breathing exercises, Mindfulness, and other techniques to help manage pain. I wanted to understand how I could still live my best life. And I wanted to talk to people and ask questions, so I joined Facebook support groups.
Support groups are invaluable for people dealing with rare conditions. It’s often difficult to meet anyone in real life dealing with the same issues. Facebook groups provide a place where people can interact with others, ask questions, share learning, make suggestions and give/get support. Many people in these groups who are positive and upbeat, despite facing intense pain, depression, anxiety and fear that often accompanies chronic health conditions.
As I visited the separate groups for each condition, I noticed one disturbing thing every group had in common. Repeated in almost every conversation thread was the claim nobody can understand what it is like having trigeminal neuralgia unless they have experienced it themselves.
Nobody can understand cluster headache unless they have it them themselves. Nobody can understand Sjogren’s unless… Ehler’s Danlos unless…
These conversations often continue by discussing how hard it is to sleep when you are in constant pain, how much easier life would be if their disease was visible, how depressed and anxious and scared their pain sometimes made them feel, how it’s about time doctors found a cure… the same in every group.
Group members talk about a doctor saying they would have to learn to live with it as surgery was not an option. They interpret this as the doctor didn’t care, because Nobody understands how bad *insert rare disease here* is if they haven’t experienced it.
They talk about real-life friends or family asking a member if they had tried acupuncture? yoga? eating more fruit? de-stressing? getting more sleep? meditation? this amazing cure *insert name of snake oil product here*? heat packs? ice packs? burying an unwashed sock filled with your toenail clippings in the garden at midnight under a full moon? Only two of those suggestions are nonsense, but every suggestion gets the same response: Nobody understands how bad *insert rare disease here* is if they haven’t experienced it.
Nobody understands how bad *insert rare disease here* is if they haven’t experienced it is an unthinking kind of thinking that needs to be challenged. It’s isolating, damaging, unhelpful. And it’s just not true. Sure, dealing with any difficult situation – health issues, work issues, bullying, domestic violence etc. – it is easy to feel nobody else understands. But feelings aren’t always true. And sometimes they need to be questioned.
Experiencing a disease themselves would not enable doctors to click their fingers and magic a cure out of thin air for it. When it is an incurable condition, learning to live with it is not an insult, or an uncaring statement, nor a lack of understanding. It’s just the truth.
Questions – even the outlandish ones – from people, healthy or otherwise, are not examples of their failure to understand, but of their success in caring. They ask if you have tried things they believe will work, because they want to help.
Understanding is knowledge and comprehension. And it is tolerance, compassion. It does not require experience – it requires learning. What I didn’t understand about my conditions and how to manage them, I learned. I’m still learning.
If nobody understands if they haven’t experienced is the definition of understanding you live by, you’re destined to be disappointed because you’ll misinterpret people’s motives. You’ll see a doctor’s honesty and a friend’s suggestions as ignorance. You’ll be miserable.
How to help people understand
Learn everything you can about your own condition, so you understand it, and can explain it to other people.
Get (and give) honest, accurate information – use reputable sites like Mayo Clinic, Johns Hopkins Hospital, British Medical Journal, the UK NHS, and official organisations like national societies for specific diseases.
Avoid clickbait articles. Verify information/articles from Facebook groups is accurate and from reliable sources. At End Trigeminal Neuralgia any information shared is always reliable.
Decide who needs to know, and how much they need to know. Be succinct and clear. The nerves in my face are broken is a simple explanation for neuralgia
Explain what causes you problems e.g cold wind on my face triggers a pain attack
Explain your symptoms e.g dry eyes, mouth, skin / aching, stiff joints / fatigue etc
Explain what causes your symptoms e.g faulty collagen makes connective tissue too loose to hold my bones in place, so I get frequent joint dislocations
Explain what help you need e.g talking on the phone hurts my face so please text instead of ringing
Ask what concerns/worries your friends/family/colleagues have. Allow them time to express them, and listen to them. Discuss what you can do together to manage them.
Get counselling, either alone or together, to help you manage any feelings of depression, isolation, fear etc.
Remember, understanding is not dependent on experience. People may not feel your pain, but they don’t need to. They need to understand you are in pain. They need to understand there are things you can’t do, and other things you have to do, in order to manage the pain. These are things you can help them understand.