Comments That Are Hurtful to Recieve When You Live with Chronic Illness

I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.

1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”

Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.

2. “Oh, I’m tired too, I know exactly how you feel.”

Ah, Chronic Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that you could sleep for 16 hours and still wake up exhausted. You have to rest after having a shower or bath because you’re shaking so badly from the exertion. Chronic Fatigue is like swimming in concrete, every movement takes enormous amounts of energy and the simplest tasks like brushing your hair or washing your hands take effort and concentration.

Being told "I'm tired too" when you experience chronic fatigue.

Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!

3. “Have you tried (fill in the blank)?”

I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.  

When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.

4. “Well, you don’t look that sick.”

This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.

Not looking sick when I apply makeup, as someone with chronic illness.

5. “When are you going to get better? You’re always in poor health.”

Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.

When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.

Maintain hope for those you know with chronic illness.

I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.   

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at  She also writes for The Mighty, and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 

Degenerative Disc Disease (DDD)

Anatomy of the Disc



spine segment


Spinal discs are the cushions between the bones of the spine, or vertebrae. They make the back flexible and protect the bones to absorb the impact of your body’s movements, much like a shock absorber.

There are two main parts of the disc, resembling a filled donut. The outer layer is the annulus, which contains the nerves. Damage to this outer layer can cause a lot of pain. The inside of the disc is a jelly-like substance called the nucleus. The proteins contained can irritate the tissues they touch and cause inflammation. If the proteins reach the annulus, they can cause much pain. (This is a herniation.) Spinal discs are unable to repair themselves, causing degeneration.

Discs are made of over 80% water. Over time, the discs dry out and shrink. This happens to everyone; however, it may lead to painful conditions such as arthritis, or herniation. Sometimes bone spurs grow and rub on the discs, or the spinal canal becomes too narrow, leading to spinal stenosis. Wear and tear over time, sports and injuries to the spine may also cause painful spinal degeneration.

When the pain of the degenerated discs cause pain that cannot be traced to another condition, it is called Degenerative Disc Disease (DDD).


Symptoms of Degenerative Disc Disease


disc degeneration


Common symptoms include:

*Pain in the low back, posterior and thighs
*Pain radiating into the arms and hands
*Pain that is nagging, severe or disabling
*Numbness or tingling in the extremities
*Pain that is worse while sitting
*Lessened pain while walking or moving
*Pain that is worse wile bending or lifting
*Pain that lessens while changing positions or laying down
*Pain lasting from a few days to several months
*Weakness in the leg or foot muscles



DDD is diagnosed through physical examination and taking a personal medical history. The physician will test range of motion and muscle strength, as well as reflexes and sensation in the limbs. An MRI can show the disc damage. Physicians will rule out other causes of spinal injury such as arthritis.



Treatment of DDD is stepped up through physical activity, physical therapy exercise, and heat and cold therapy to medications (NSAIDs and pain relievers) and surgery. Other treatments may focus on managing other issues associated with the pain, such as sleeplessness and depression.


physical therapy
Other treatment may include acupuncture, behavioral medicine, braces, chiropractic, electrotherapy, muscle relaxants, nerve blocks and stress management.






Spoonie Story: David

spoonie story david

Hi, my name is David. I’m a 60-year-old (male) Spoonie from California, now living in Connecticut. The List: a heart condition (H.O.C.M., an enlarged heart with leaky valves), ulcerative colitis, osteoarthitis (both hips were replaced in 2015), high blood pressure & obesity (both under control), and vision problems (eye surgery for a detached retina earlier this year).

spoonie story david

Oh, and high-function autism, alcohol dependence (2½ years of sobriety), depression (I was first diagnosed as clinically depressed at age 12), anxiety disorders & panic attacks, and, most recently, insomnia (I’ve sometimes gone 3 nights without sleep).

Jeez, I’m a real mess, aren’t I?

My family background is also a mess. My sister and I were abandoned by our father as infants – we *never* had contact with him. Most of the information we have about our father came off the Internet. He was replaced, for a while, by an abusive stepfather. Our mother was in-&-out of hospitals (5 cancer operations in 10 years; I was ages 8 through 18). My mother’s mother was in-&-out of mental institutions throughout much of our childhood.

Unsurprisingly, I’ve spent many years in therapy – I’m lucky that most of the medical problems only developed after age 50. I wouldn’t call myself a happy person, but I am reasonable content. I’ve accomplished a lot in my life – although very little of what I wanted to achieve as a young person. At different times, I was going to be an investigative journalist, a playwright/actor, a classical musician, &/or an evolutionary biologist. I turned out to be a book nerd, an editor/proofreader, and a bookseller – and a decent human being. I had to learn how to let go of people I that loved – and that, no, the pain never really goes away – but it’s possible to tolerate the pain, and go on.

I’ve learned that others do love me (despite all my doubts and frailties) and that I love others. Over the years, I’ve acquired social skills and lost the squeamishness that stopped me from getting the help I needed. It has been a rocky path to travel, and a wearying amount of work, but I don’t regret it.

Hang in there, fellow Spoonies!



Spoonies are not always women! Want to read another Spoonie Male story? Read Marc’s story here.