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. 

My Life With Fibromyalgia

My Life With Fibromyalgia

My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 57 now. Mostly, it was mild for many years, but painful enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.

Contributing Factors

In 1991, I was in a single vehicle car accident where I spun out on black ice. I took out the driver’s window with my head. Fortunately, I didn’t suffer any broken bones, but I did have a lot of soft tissue damage. I also suffered a huge fibromyalgia flare-up, and was in pain for months, despite going for physiotherapy. This was when I received my official fibromyalgia diagnosis.

Something else that has contributed to my fibro pain is the number of surgeries I’ve had in my life. I underwent stomach surgery in 2004 for severe gastric reflux disease and ended up with nerve damage. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma!

My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years. All of these surgeries caused my fibro to flare-up repeatedly until I was in what felt like a permanent flare.

And if that weren’t enough, I also live with Osteoarthritis, Myofascial Pain, Chronic Fatigue Syndrome, and several other health issues. These all combine to make my fibro pain unbearable at times.

Living life with fibromyalgia and the factors that led to it.

I’ve been lucky in that I’ve had good family doctors in both cities I’ve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others.

Treatments for Fibro

We tried several types of injections for the Fibro trigger points, including Botox, but nothing helped. My fibromyalgia was also treated by putting me on Lyrica first and then Cymbalta, plus a narcotic called OxyNeo (oxycodone). This is the treatment plan I follow to this day.

I also use Mindful Meditation, Music Therapy, Heat and Cold, Epsom Salt baths, Magnesium rubs, and I’ve tried Flotation Tank Therapy as well. Everybody is different in what works for them and these are all things I’ve found that help me especially during a flare-up.

I also use Mindful Meditation, Music Therapy, Heat and Cold, Epsom Salt baths, Magnesium rubs, and I've tried Flotation Tank Therapy as well to help manage my fibromyalgia

My faith as a Christ follower is huge as well, and prayer plays a big part in my life when it comes to pain and managing it. It also helps to have a supportive partner. My husband does way more than his fair share around the house when I’m not able to pitch in with chores and stuff. He understands that I have bad days and is always available for sympathy and a hug.

Daily Life

I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift positions to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my fibro and arthritis pain said it’s among the worst he’s ever seen. I feel like my muscles are encased in concrete as they constantly feel heavy and aching and hard to move.

With fibromyalgia, I feel like my muscles are encased in concrete as they constantly feel heavy and aching and hard to move.

I’m never pain-free, I’m perpetually exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.

My body is hypersensitive to many things, including the feeling of labels in clothing, loud noise, smells….you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms, and chest. So embarrassing and uncomfortable!

For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away.

I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.

Hip Replacement Surgery

In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasn’t sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain.

My recovery took approximately 6 months and while I’m still using a cane, it’s because I have knee problems on the same side, not because of the hip. My hip feels great and I’m so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so. And during the period right after the surgery, I actually had only a minor fibro flare, partly due to the medications I was taking and partly due to the continual icing of the joint – it helped to keep things to a minimum.

There Is Always Hope

I’ve struggled with a lot of health issues, but my motto is “there is always hope”. It’s the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact there’s a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted.

About the Author:

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. 

Myofascial Pain Syndrome

Myofascial Pain Syndrome on The Unchargeables.

Pain from muscle tension is something most people have experienced. Muscles and surrounding connective tissues can be strained and sprained through sports or other activities. You may suddenly find yourself rubbing a tense muscle in your neck or back if you’re experiencing stress from a job or anxiety-inducing situation. But the pain associated with Myofascial Pain Syndrome (MPS) often does not resolve and can even worsen as time progresses.

Myofascial Pain Syndrome is a significantly painful chronic condition. MPS can happen after repetitive contraction of a muscle. It can affect a single muscle or a group of muscles. This can be brought on by continuous movements utilized as a part of employment, interests, or by muscle tension due to stress. When pressure is placed on certain sensitive points (known as trigger points) in muscles, it can cause severe, chronic pain in both the muscle itself and in other parts of your body that seemingly have no correlation with the injured muscle. This is known as referred pain.

Symptoms of Myofascial Pain Syndrome

Muscle injury can lead to Myofascial Pain Syndrome.Signs and symptoms of myofascial pain syndrome might include:

  • Deep, aching pain in a muscle
  • Pain that persists or worsens, especially with activity or stress
  • A tender “knot”, or trigger point, in a muscle
  • Difficulty sleeping due to pain

Causes of Myofascial Pain Syndrome

Trigger points can form in muscles after overuse or an injury to a muscle or group of muscles, ligament, or tendon. These trigger points are tight areas of muscle tissue that are extremely sensitive and can cause pain throughout the muscle.

MPS is caused by some kind of stimulus that leads to the formation of trigger points in the muscles.

  • Muscle Injury. Trigger points in a muscle may be caused by an acute injury or repeated stress to the muscle.  Injury can also be caused by poor posture from such a common condition as general fatigue.
  • Medical Conditions. Certain medical conditions can predispose and individual to developing MPS. This can include conditions such as stomach irritation and heart attacks due to the strain placed on muscles. Certain back injuries, such as injury to the intervertebral discs, can also contribute to MPS.
  • Lack of Activity. In the event of an acute injury, certain muscle groups may need to be rested. This can involve an arm in a sling or a leg in a brace. However, not utilizing these muscles as one normally would can lead to tension.
  • Stress and Anxiety. It is possible that individuals who clench their muscles more, such as those who experience frequent stress and anxiety, may develop trigger points in their muscles more frequently than others. The muscle clenching may act as a form of repeated strain, causing trigger points.

Diagnosing Myofascial Pain Syndrome

Diagnosis of MPS requires a physical exam by a doctor. The doctor will push on the painful muscles in a certain way in an attempt to elicit a response, such as muscle twitching, at a trigger point.

There are four different types of trigger points that may be identified in patients with Myofascial Pain Syndrome.

  • Active Trigger Point. An active trigger point is an extremely tender area usually located within a skeletal muscle.
  • Latent Trigger Point. A latent trigger point is an inactive area that could possibly act like an active trigger point.
  • Secondary Trigger Point. A secondary trigger point is a very tender spot in a muscle that can become an active trigger point as a result of the presence of a trigger point in another muscle.
  • Satellite Myofascial Point. A satellite myofascial point is a very tender spot that actually becomes inactive because it is located in a muscle area that is already involved in trigger pain.

It is important to remember that there can be numerous causes of muscle pain. Your doctor may recommend additional testing to rule out any other conditions.

Treatment of Myofascial Pain Syndrome

Treating MPS typically involves medications, trigger point injections, and/or physical therapy. Relief of MPS may necessitate more than one mode of therapy.


Some oral medications may be effective in treating the pain associated with Myofascial Pain Syndrome.Medications utilized for MPS include:

  • Pain relievers. Over-the-counter pain relievers, including ibuprofen (Advil, Motrin) and naproxen sodium (Aleve) may be effective. Depending on the severity of your pain, your doctor may recommend stronger pain relievers.
  • Antidepressants. Some antidepressants have pain-relieving properties. Additionally, they can be used to treat co-existing conditions, such as depression or insomnia. In particular, the tricyclic antidepressant amitriptyline seems to be effective in easing MPS pain and helping with sleep.
  • Sedatives. As some individuals with MPS may experience poor sleep as a result of their pain and/or anxiety, clonazepam (Klonopin) can be used. This medication must be used with care, as it can cause sleepiness and be habit-forming.

Physical Therapy

A physical therapist can design a therapy program to help relieve your pain based on where your pain is located, as well as its severity. Physical therapy to help alleviate the pain of MPS might include:

Gentle stretching can help relieve the pain of Myofascial Pain Syndrome.Stretching. You may be taught gentle stretches that pinpoint the affected muscle. This may help ease the pain caused by the trigger point. Alternatively, a method known as “stretch and spray” may be used. This technique involves spraying the affected muscle with a numbing agent and then slowly and gently stretching the muscle.

Correction of Posture. Fixing your posture can help with the pain caused by MPS, especially if the pain is in your neck. Strengthening the muscles that surround the trigger point can help avoid any one particular muscle from being overworked.

Massage. A physical therapist may use a particular kind of massage to alleviate the pain of MPS. This type of massage may use long strokes along the muscles or heavy pressure to release the tension causing the trigger points.

Heat. The application of heat, through a hot pack, heating pad, or a hot shower, can help relieve muscle tension and pain.

Ultrasound. This sort of treatment uses sound waves to improve the circulation of blood to the affected muscles, which may promote healing.

Needle Procedures

Trigger point injections or dry needling can be used in the treatment of Myofascial Pain Syndrome.Needles can be used in several different ways to help alleviate the pain of MPS.

  • Trigger Point Injections. The injections of numbing agents and/or steroids directly into the trigger point may be effective in relieving pain. Several injections can be done in one office visit.
  • Dry Needling. This procedure involves the insertion of a needle into the area surrounding the trigger point, as well as the trigger point itself. Although no medication is involved, simply the insertion of the needle can help break up muscle tension.


There are numerous ways you can help yourself manage the pain of Myofascial Pain Syndrome. It is important to engage in various forms of self-care to make yourself as comfortable as possible.

Exercise. Engaging in mild exercise can help improve your pain. When you are able to, get up and move around.

Relax. One of the most common treatments suggested by doctors for any condition, finding ways to relax can actually help with the symptoms of MPS. Stress, anxiety, and the tension caused by them, can worsen your pain. Find ways to relax that are helpful to you.

Treat your body well. Use common sense. It is well known that eating a healthy diet and getting enough sleep is beneficial to overall health and wellness. Engaging in these healthy activities can only improve how you feel on a day-to-day basis.