12 Things Not To Say To Someone With a Chronic Illness
Everyone living with chronic illness has a story but do we really stop to listen? They not only feel misunderstood, but are viewed with distrust when seeking help to manage their pain. It’s so easy to pass judgment, especially on those living with chronic conditions that are not easily apparent. Hopefully the following “12 Things Not To Say To Someone With Chronic Illness” will help extend some much needed compassion and empathy to those still suffering.
1. But you don’t look sick.
I do not look sick because I work hard to ensure that my diagnosis does not become my identity. When people look at me, I want to be treated as an equal. When I go about my daily activities I don’t want others to see the internal pain I am forced to struggle with daily. I slap on a smile and power through the pain.
The face you see is merely a mask, and I wear this mask to separate myself from my illness, pity, and sympathy. I do not look sick because I am a chronic pain warrior. My illness may not be visible but it is with me constantly, and is a very tangible part of my reality.
2. You’re too young to be sick!
We see people in our treatment center from all across the United States who are told “you’re too young to be sick.” We educate and support them to process their diagnosis’ and find a renewed sense of hope for the future. We teach them sustainable ways to manage their pain and address the psychological symptoms of pain, without reliance on problematic opioid medications.
No kidding! In fact, I am constantly reminded of this every time I log into Facebook or Instagram and see my peers actively living out their lives. I should be spending my weekends traveling to music festivals, not watching them through a livestream.
You would think I should be able to go school or work without preparing for every worse case scenario, but that is not my reality. Expanding my social circle should go beyond that of meeting new doctors and specialists, or chatting with the other people waiting in line at the pharmacy.
I want more than anything to be healthy, but these are the cards I have been dealt. It was difficult enough being diagnosed with a chronic condition and coming to terms with my new reality. I try and ignore the fact that it is “unfair,” because yes, I am too young to be sick.
3. I wish I could call off sick whenever I wanted
Being at work is one of the few times I feel normal; and by normal I mean someone who hasn’t been diagnosed with a debilitating chronic condition. I look forward to having social interaction with my colleagues and clients, and having a set schedule of tasks is a great distraction.
The desire to contribute is ingrained in our basic human nature. Each and every time I am forced to call off of work, I feel defeated. I feel like I’ve lost an internal struggle and feel consumed with shame for being unable to contribute.
This has been especially stressful when my employers were unsympathetic about my chronic condition. I hated having to weigh the decision of making my pain worse by powering through my shift, verses going home and feeling afraid of getting written up or fired.
4. You should just get more exercise.
Our primary residential program offers movement activities like Tai Chi, aquatic exercise, and restorative yoga. We chose these because they are highly modifiable, low impact methods of getting exercise. They are incorporated into our treatment curriculum to support patients in developing a set of holistic treatment modalities as part of their treatment plan. Call today to learn more at 844-388-4100, or click here to send us a message.
It is true that exercise is one of the best ways to increase energy, reduce pain sensitivity, regulate inflammation, and improve overall immune system support.
However, think about how difficult it is for a healthy person to implement exercise into their weekly schedule. It takes time, discipline, motivation, and energy. Now, combine these standard barriers to exercise with debilitating pain, chronic fatigue, and anxiety about potential pain related flare ups.
Finding an exercise strategy that works for chronic pain can be complex. It needs a balance of working hard enough to feel exertion while pacing yourself to prevent future pain.
5. You should get more rest.
Those of us living with chronic illness become masters of rest. We learn the importance of activity pacing and understand that overexertion can lead to increased inflammation and pain. We discovered how important it is that we learn to respect our body’s effort to communicate, and to take those breaks when we need to.
However, this does not mean that getting quality rest is easy. Even when I clear my schedule on a Sunday to stay in bed all day, I am not resting. I am actively fighting to distract myself from continuous pain.
6. It’s all in your head.
Our team has developed a curriculum designed to help you shift from suffering with pain to thriving despite it. Our Addiction-Free Pain Management® PLUS System is a comprehensive approach to pain management, combining biological, psychological, social and spiritual modalities to help you find freedom from suffering.
We hear this from everyone. From doctors, to friends and family, even the occasional troll on social media. Trying to keep track of symptoms can be maddening, even more so when you report these symptoms to your doctor or specialist and they find them unexplainable.
And it is true, there is a distinction between physical pain and suffering. Pain is the physiological response our body’s produce to tell us that something is wrong. Suffering on the other hand is the psychological processing and interpretation of that pain. But it doesn’t mean I don’t feel that pain – it is real.
Many people struggling with chronic pain have not been offered the education or tools to help regulate emotional processing of pain. Unregulated emotional responses to pain can result in heightened perception of pain, anxiety, and depression.
7. It must be nice to relax in bed all day.
If that is true, you and I have two completely different interpretations of the word “relax.” When I get home and hurry to put on my pajamas, its not because I miss my soft sheets. Its because I have spent yet another day powering through assignments and errands that others accomplish effortlessly.
My body screams for rest throughout the day, and I struggle to resist this temptation until I am home. And just because I have made it to bed does not mean I am out of pain. In fact, this is my opportunity to focus exclusively on lowering my pain so I can hopefully sleep through the night. I do my best to practice relaxation techniques or distract myself with music or a show, but the pain is always there.
So when you think I’m in bed relaxing, I’m actually making a conscious effort just to get comfortable in my own skin.
8. You seem to always be at the doctor.
Our individualized, concurrent treatment helps streamline the treatment planning process. Each week our team meets to discuss the progress and effectiveness of each patient’s treatment plan. We also offer pharma-genetic testing to identify which medications are the most effective for each patient. Above all, our mission is to help you find a new and sustainable approaches for managing chronic pain.
Yep. This is often the case with autoimmune disorders. Symptoms change quickly, so I see a number of specialists and am often playing the guess and check game with new medications. The little free time and energy that I have is spent waiting in doctor’s offices or in line at the pharmacy.
Some of my primary social interactions are with physicians and therapists, and this isn’t always a pleasant encounter. Dread and uncertainty loom before each appointment as I’m often receiving news that is hard to digest. However, this is part of life living with a chronic condition, and I try my hardest to keep that in mind. On the bright side, my local pharmacists know me by name and typically have my medication ready upon my arrival, so I have that going for me.
As a chronic illness patient, I often need a team of doctors working to address all my symptoms of pain. Unfortunately, my providers rarely communicate, and their treatment approaches may interfere with each other, so I get frustrated; with my doctors, the system and my condition.
9. Have you tried _____________?
Hmm, thanks for the question, but do you really think I have not tried almost everything that may have had a chance of working? Yes, I have tried many things. I am also active on social media and chronic pain focused sites. Unfortunately, many remedies found online and on message boards are not evidence-based and offer false hope. These are so new that it is difficult to say if it will cause more harm than good over time. This is especially true if I’m not careful about potential interactions with my medications.
Click here to read more about the evidence based modalities used at A Healing Place – The Estates.
10. Oh, that’s exactly how I felt the last time I had the flu.
The flu is by no means a walk in the park. But just try to imagine the worst flu you ever had; remember the cramping, muscle soreness, nausea and fatigue? Remember how each night all you could hope and pray for was a full night of uninterrupted rest? Now imagine this lasting for a month, three months, a year or more. Welcome to life with a chronic pain condition.
With the flu, at least you know there is a light at the end of the tunnel and over the counter remedies that work for symptom management. You can actually begin to feel the moment when the worst symptoms are passing.
Life with an chronic illness is just the opposite; it’s something that changes your life forever and sets you on a path that you wouldn’t wish on your worst enemy. It should never be equated with a seasonal flu.
11. You should change your diet or just lose some weight.
Living with chronic illness forces you to slow down the pace of life. We find ways to change our daily routine to prevent over-exertion. Some of these are obvious, like taking an elevator instead of the stairs. Others are less obvious, for example shopping for groceries online and having them deliver.
Shopping for food online and having it brought out to my car in the Target parking lot is a blessing, but you don’t get to take the employee home and have them cook a fresh hot meal for you.
Planning and preparing healthy meals is time consuming and exhausting. After getting through another pain filled day at work, the thought of prepping a healthy, balanced meal is daunting. Purchasing ingredients, prepping, cooking and cleaning, is an exhaustive process. I do my best, but it’s a challenge I struggle with on a daily basis.
Instead of commenting about what I “should” do, why not offer to help?
Learn more about getting friends and family involved in weekly meal prep in our Self Care in Chronic Pain Management article.
12. You need to get out more and not isolate so much.
When patients enter our program, our clinicians include family members and friends in the healing process. Our Family Program focuses on family of origin patterns, healthy communication strategies, and healing generations of pain.
Have you considered that there may be a reason I am so isolated? When I was first diagnosed, friends and family rallied by my side saying they would be there to help any way they could. The first few months were great and were there for me whenever I needed them. However, over time support dwindled.
My friends withdrew, and family members burnt out as support started to feel more like a chore. Communication breaks down and fights become inevitable.Addressing social suffering is a core component of our work.
We recognize that a one-size-fits-all approach does not work for chronic pain patients whose condition is complicated by psychological / emotional pain symptoms, family systems burnout, and spiritual disconnection. We advocate concurrent treatment and support our patients to explore a variety of non-pharmacological modalities to help manage pain and suffering.
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