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  • Writer's pictureShannon Gallagher, CCC, LCT-C, RCC

Let's Talk: Chronic Illness/Pain Experience

Updated: Jan 25

When we talk about chronic illness and chronic pain it is usually only discussed from the symptoms perspective of what a person deals with in relation to their diagnosis. However, many aspects of chronic illnesses and chronic pain are important to understand especially if you have a loved one who has chronic illnesses or pain. Some topics may be more obvious than others so I will start with some of those first to ease into the topic.


1. Physical symptoms of their diagnosis: This is the most talked about for good reason as with any chronic illness or pain concern it can mean more than one symptom at any time which can disrupt many aspects of the individual’s life. This can range from pain to even more things like nausea or dizziness, to debilitating pain, or needing to go to the hospital. Another important thing to be aware of is that even one symptom can cause enough concerns that make the individual need to rest or not participate in usual activities. This leads to our next topic.


2. Loneliness and Isolation: due to the symptoms it can mean someone who used to go to all the events now only may attend one function every few months. As well, the sad reality of chronic illness and pain is that not many people understand which can result in fewer invitations and even loss of friendships and support. Many with chronic conditions tend to have a very small circle of close people at the most. Another aspect of this issue is the idea many of my clients experience “not wanting to be a burden”. This results in not asking for help and isolating themselves from even the small circle of support they do have. Leading to…


3. Depression: With loneliness and isolation come symptoms of depression. This is due to a lack of or no social support, and not taking care of their personal needs (from hygiene all the way to zero self-care). Some studies even show that chronic conditions like asthma, Crohn’s disease, and diabetes increase the likelihood of suicidal thoughts by upwards of 28 percent. As well, some reports that individuals with Fibromyalgia and POTS (Postural orthostatic tachycardia syndrome) show that 50% of those patients have reported having suicidal thoughts. This shows how serious these symptoms can get for individuals with chronic conditions.


4. Anxiety: For many of my clients the anxiety can stem from wanting to feel more control over their experience or their lives, or even from the unknown around if anything will ever get better or if is it just going to get worse. This can result in mood swings from stress, angry outbursts, and avoiding things they think are not helping anymore (which they may still be helping but the anxiety makes them feel like it no longer is).


5. Higher Cost of Living: This is one of the aspects of this experience that is both self-explanatory and not self-explanatory. This is because every individual with a chronic condition has a different cost associated with their condition. Therefore, this can also confuse lawmakers and the government about how to support individuals accurately. Some clients manage the condition generally with just their base medication, but some need various professionals from multiple disciplines (dieticians, physiotherapists, massage therapists, acupuncture, therapists, different doctor specialists, etc.) to help manage their various symptoms and concerns. As you can tell from the list not all of the supports a person may need access to are covered by health plans or the government medical system. This means that most of the support a person may need comes directly from their personal funds. To give a good example that can illustrate how bad this can be for someone let’s look at the funds from the government that someone on disability gets in Canada.

Benefit

Average Monthly Payment (Oct. 2022) and Maximum Monthly Payment 2023

Regular CPP disability benefit

$1,064.80

$1,538.67

CPP disability post-retirement benefit

$524.64

$558.74

CPP disability children's benefit

$264.53 (per child)

$281.72 (per child)


When looking at these numbers and considering the cost of each professional all their medications, and the fact that many cannot work to add that allowed extra income. There is no way a person could survive and access all the services they would need, to ensure they are managing their conditions as they could be. Many of my clients only have enough extra after bills and other expenses to get their medications (if that). Some sadly cannot even afford their pills at all due to there just not being enough to cover them at all. This is a huge issue.


Person looking overwhelmed

6. Hopelessness and Frustration: For many the feeling of hopelessness and frustration comes from the professional community. These issues with professionals lead to what I will discuss for number 12. However, professionally speaking much of the frustration and hopelessness comes with the treatments and support for those with chronic illnesses and pain. From the high costs to the treatments barely helping many suffer in silence wishing anything would get better when it comes to their symptoms. Many medications they are given tend to only do the bare minimum and sadly do not always remedy the long list of symptoms clients experience in the running course of the day. This means that many individuals are barely scraping the surface of symptoms being decreased. For many, symptoms are only lessened by a small fraction. Something I hear a lot is “But I should be getting better, my doctor said this medication should significantly reduce my symptoms, why isn’t it working”. This is a heartbreaking thing to be overpromised and under-delivered. This means that often these patients are told it will be a huge difference to only see that small fraction if anything changes. There is no surprise that they are likely to feel frustration and hopelessness as a result.


7. Fatigue: For this section, I like to discuss the Spoon Metaphor. For the chronic illness community, we like to use this metaphor to explain the physical capacity we have each day to do tasks. This is why the community is often referred to as the Spoonie Community. When we look at each day our amount of energy and physical ability can change from day to day and hour to hour. So, for many in the chronic illness and pain communities, an important aspect of care is to get a good grasp each day of your capacity for physical tasks. This means one day you may only have one spoon, meaning that you can only do one thing that day before you are tapped out of your energy. Then the next day you may have four. This fluctuation confuses many who do not have chronic illnesses/pain as many wake up with the same energy capacity as the day before generally, so this is hard for many to grasp.


8. Anger: This anger can come from the shock, fear, or grief from their diagnosis. For many a new illness that is uncurable and causes so many issues is a grief process for the life you wanted or thought you would have. And a huge part of the grief process is anger. This will fluctuate and the anger will not be constant for most people. The anger will be seen more during times of hardship or when the illness prevents them from doing something they are excited about. For this, my biggest recommendation is patience, love, and trying to show them that even though they can’t do something or need to cancel plans the day does not have to be ruined and we can find joy in other things. This is hard though and sometimes that will not work, and patience and love are the only options. I cannot stress this enough though, when people are in pain it is far harder to control their emotions. This means that they will get angry over things that they usually wouldn’t do or seemingly get mad at people not at fault. For my chronic illness patients early in the journey I also teach them some anger management methods, as well as, how and when to apologize and to take ownership of the misplaced anger. Like everything though this is a process not a quick fix.


9. Feelings of Distress: For many this comes from not knowing what to do now. How do I still do the things I love? If I need aides for walking how will people look at me? What if I use my parking pass and someone does not believe I have a disability? What if people pity me or treat me differently? Should I hide this? These are just some of the questions that loop in peoples’ minds when they first get diagnosed. We will talk about the stigma later, but the stigma creates these questions. It creates distress. In addition, based on the research people who have had stressful life events before diagnosis, or a history of depression have a high risk for psychological distress. It is the constant worry and fear added to the existing concerns. That is why seeking the help you need is always recommended to ensure that this risk is lowered.


Person or doctor looking at x-rays

10. Disabilities: Yes, most chronic illnesses and chronic pain conditions are considered disabilities, however, this does not mean that the main diagnosis cannot cause more diagnoses to occur that are also considered disabilities. It is very common to see someone with a chronic illness who also has another condition that would also be classified as another disability. And no, having more than one does not generally mean more government support in any way. The only time I ever see more funding is when there are aides for my physical conditions for example if the patient needs a wheelchair or lifts to get out of bed. However, the funding usually only covers a portion, and those items are very expensive. Therefore, more conditions mean more terrible symptoms and more financial burden on someone who is already dealing with more than enough, to begin with.


11. Intimacy Concerns: This is a double-edged discussion. Some can see a decrease in sex drive and some an increased sex drive. Another aspect to keep note of is the protective nature partners can exhibit for their partners with chronic illness or pain. This is the aspect of not wanting to hurt or make something worse. I always tell my clients that communication is key, and the partner can tell the other(s) if something starts to hurt or if they need to change positions for comfort. It is very important to communicate needs and when something hurts. This way it removes a lot of the stress that you may hurt your partner(s). The bottom line though is trusting that your chronically ill or chronically in pain partner will let you know and not hesitate to have intimacy whether that be holding hands to sex.


12. Trauma Associated with Medical Professionals: It is the constant stream of doctors and other professionals not believing their experience or being completely gaslit by those professionals. Often chronic illnesses are “invisible illnesses”, meaning many do not outwardly look like they are in pain or suffering, but in fact, they are more than anyone else knows. Sadly, from personal and the client's perspectives doctors, and other professionals take the lack of visible problems as ‘proof’ that nothing is wrong and blame something else instead of doing more testing or even trying to do something to help with the symptoms. This results in frustration, and feeling like nothing will ever get better, no one will help me, and why bother continuing to try to find someone who will care. This is something I hope gets addressed soon by the medical community!


13. Issues Stemming From the Stigma Around Chronic Conditions: There is a huge stigma surrounding the chronic illness and chronic pain community. Don’t get me wrong there is one for the ‘visible’ disability community. However, something changes when the diagnoses are essentially ‘hidden’ or ‘invisible’. People are less likely to believe that you have things going on, less likely to think you are entitled to use a blue parking spot, or they think you are less likely, to be honest about your experience. The worst however can come from the medical community. This means that due to the stigma, it can take on average 5-12 years to get a formal diagnosis. The medical community tends to first blame weight, diet, and lack of exercise. There is a lot of pain, there are a lot of symptoms that make some ‘healthy’ foods make the pain or symptoms worse. As well, exercise especially if it is not the right kind for your illness or pain can make everything so much worse as well. In addition, due to the diet issues that can happen, and the lack of exercise due to pain or worsening symptoms this can lead to weight gain that we did not plan or even weight loss. Obesity for example has a very high association with chronic pain. This leads to the common stigmatized view that people with chronic pain or chronic illnesses are lazy, lying, or putting on a show. When in fact it is the complete opposite. The community wants to work, want to contribute, want to be invited, and go to family or friend gatherings. However, they are dealing with aggressive pain or awful symptoms that make staying home and resting the only option they have. Developing an understanding of the full scope of the experience is very important to decrease or even remove the stigma around these conditions.



There are many reasons to remove the stigma and associated external concerns around chronic pain and chronic illness. The main issue I notice a lot is that other people’s expectations will never align with the chronic pain or chronic illness experience, and nor should they. Everyone regardless of diagnosis or no diagnosis deserves love, friendship, help from the medical community, and understanding/accommodations at work. I hope this helps people to better understand the chronic illness/pain experience a little better. Please let me know in the comments if you would like more information on any of the above points. Let me know as well if there is a topic you would like me to cover next month.



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