I was speaking with someone recently who has a series of chronic and painful conditions; some of which are noticeable and some ‘invisible’. What is particularly distressful is that people sometimes say to her, “At least you don’t have cancer.” How dismissive is that? I know they are trying to help her feel better about what she does have and perhaps even attempt to minimize the impact, but it is not compassionate or helpful.
There are diagnoses such as fibromyalgia, lupus, diabetes, arthritis or neuropathy which some people have to navigate. It might mean taking naps on an as-needed basis, engaging in pain management protocols, delegating tasks, re-negotiating agreements and, in extreme cases, making major lifestyle changes such as applying for disability or hiring at-home help.
A smiling face may mask severe pain that the person has learned to accommodate. This woman I referenced above still holds down a job and raises her children with her husband. In between those responsibilities, her calendar is filled with healthcare appointments. It has become her ‘new normal’ for the past 10 or so years.
She wishes that people wouldn’t doubt her. When I asked her to elaborate, she explained that only a few people she knew truly grasped how limited she feels, and that ‘society’ judges people like her. I reminded her that her primary task was to do whatever she could to care for herself without taking on that added burden and that by educating those she knew she was educating society as well.
Another challenge people with chronic illness face is the dichotomy of ‘good days and bad days’. If someone has a series of pain-free or otherwise higher functioning days, their family or friends may breathe a sigh of relief that they are ‘better’ and have greater expectations for what they can accomplish. Even the person themselves may push farther than what might be healthy since they are experiencing a higher level of vitality. On the ‘bad days’, their loved ones may think they are exaggerating.
Sometimes those whose illness is not apparent, run out of proverbial spoons and can’t muster the energy to take one more step. That’s when asking for help — as challenging as it may be — is necessary. It takes revisioning who they thought they were into who they are in this moment. This woman said she might have anticipated feeling nearly incapacitated at times several decades in the future, but not in her 40s. I reminded her that although I have 20 years on her, there are times when I would not have conceived feeling limited either. When I have found myself in the midst of a health crisis, as I have since 2013 (shingles, heart attack, kidney stones, adrenal fatigue and pneumonia in order of appearance), I have wondered how long the impairment would continue. Since I work with therapy clients, I want to understand as best I can, without needing to experience what they do. As fortune would have it, all of the conditions have dissipated with minor residual impact.
There are ways that we can be supportive to the one in pain — without adding to it.
- Be a listening presence without feeling there is a need to come up with answers.
- Let them express a full range of emotions such as sadness, anger, frustration, or a sense that their body has betrayed them.
- Offer to help with tasks that they may have been able to do without thinking twice in the past.
- As is so in any situation where loss has occurred (even if it is loss of functioning in some area), don’t tell them you know how they feel. We are unique individuals.
- Remind them of their value even if they are not as hale and hearty as they were before.
- Be sensitive to what sets the symptoms in motion, such as variation in room temperature, being around certain aromas, bright lights, crowds or noise.
- Understand the link between physical conditions and emotional states. Someone is likely to have increased anxiety in anticipation of symptom exacerbation.
- Let them know that you ‘see them’ for who they truly are, and the diagnosis doesn’t define them.
Some additional perspective on the conversation:
“I was just thinking about that behavior or treatment. Like we’re not allowed to feel any way about our own condition because someone else’s is more important. And sometimes it’s meant well, but sometimes it’s meant to be insulting and demeaning.”
“I know this all too well. My husband suffers from chronic pain and other related symptoms that cannot be seen on any scans. Makes it hard for some to understand and also to receive disability.”
“I have several invisible illnesses… we hear all kinds of incredible things.”
“I think that we have a society that’s very much in denial of human frailty and illness and impermanence. So, I think they don’t know what to say because they just don’t understand or are in a fear state themselves.”
“I think any comment beginning in ‘at least…’ should never be uttered!”
“That’s so dismissive and so uncaring.”
“Wow. I have experienced some of the same thoughtless comments. Many diseases are invisible and what people don’t know is that the people who have them and are trying so hard to appear well and ‘normal’ to the outside world and it’s a struggle every day.”
“Dealing with chronic pain is very challenging and should never be dismissed as something insignificant. Untreated/unattended chronic pain can lead to other serious health problems. Meditation is a great way to take charge of the pain.”
“I feel it’s very important to let go of what other people think. It’s their reality. We are all insensitive at times for varying reasons. Our illnesses are our own expression. It’s not there for people to pity us or to encourage us. When we are children, we feel every dreaded word others put out to us. As adults it’s our responsibility not to expect those around us to act according to our plan. That never works. My 12-year-old was diagnosed with Lyme recently and he himself said at least it’s not cancer. I’m not sure where he got that. But to him it’s the worst.”