Not long ago, I was talking to somebody that has a collection of chronic issues; a few of which are apparent and a few unapparent. What is even more upsetting is that when discussing these conditions with others, people occasionally say to her, “At least you don’t have cancer.” How contemptuous is that? I understand these people are attempting to help her feel better accepting these conditions and moving forward, and maybe they are trying to reduce the blow of these struggles. However, these responses are certainly not beneficial.
Examples of chronic conditions include fibromyalgia, lupus, diabetes, arthritis, and neuropathy. These conditions appear differently in each victim, making them extremely hard to navigate. Management could involve napping as needed, practicing pain management protocols, asking for help with things you could previously do, re-negotiating tasks, and sometimes, taking part in major lifestyle changes like applying for disability or hiring at-home assistance.
Sometimes it can be hard to recognize whether or not someone is dealing with constant pain. Some learn to hide it well. The woman I previously mentioned has a career, is a mother and a wife. Intertwined within these duties are appointments for her chronic illnesses. And for the last 10 years, this has been her way of life.
She longs for the day that people stop doubting her. I asked her to clarify what she meant, and she told me that only a couple of people in her life really know exactly how restricted she feels. She said that people in today’s world critique people in her predicament. I pointed out to her, that in educating those around her, society would start to learn more and more, and that all she needs to be concerned about is caring for herself.
As if the constant pain isn’t enough to deal with, yet another obstacle individuals with chronic illness face is the dichotomy of ‘good days and bad days’. If a person has a sequence of pain-free or overall better days, their loved ones may believe that they are better and could possess increased expectancies of what they may be able to complete. The person themselves, may strive for something beyond what is possible or healthy due to the fact that they are feeling better that day. On the ‘bad days’, their friends and family may think they are fabricating and describing the pain as worse than it really is.
In some cases, people whose ailment is not obvious, can’t keep up the façade and taking another step seems impossible. At that point, it’s time to seek help—as difficult as it may be, it’s needed. Modification is needed to change from who they thought they were to who they are in this moment. This particular woman told me that she knew at some point in her life she would feel crippled, however not in her 40s. I told her that even though I am about 20 years older than she, sometimes I couldn’t imagine feeling limited either; even with the hefty amount of health issues I’ve experienced since 2013 (shingles, heart attack, kidney stones, adrenal fatigue and pneumonia). Fortunately, despite all of my health issues, the conditions have depleted with minor lasting effects.
The moral of the story is that we can support those suffering without adding to their suffering:
- We can be supportive to the one in pain — without adding to the pain.
- Listen without the urge to give answers
- Remind them of their value.
- Allow them to feel all of their emotions such as sadness, anger, frustration, or a sense that their body has betrayed them.
- Even if you’ve experienced a form of loss, don’t tell them you know how they feel. We are unique individuals.
- Offer to assist them with tasks that they may have been able to do before.
- Understand the link between physical conditions and emotional states. Someone is likely to have increased anxiety in anticipation of symptom exacerbation.
- Be sensitive to what sets the symptoms in motion (i.e. deviation in room temperature, certain aromas, bright lights, crowds or noise.)
- Tell them that you ‘see them’ for who they are and not as the condition.
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Thanks for this wonderful article, Edie. It is spot on!
One additional way to support those living with one or more chronic illnesses is to not take it personally when they have to cancel plans or leave a gathering early. Often, the spirit is willing but the body just can’t do it.