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Supporting Someone Living with a Chronic Illness
Chronic illnesses can impact someone physically, mentally, and emotionally. People often assume that if they open up about their difficult experiences, they may not be understood or received well. When people realize that their loved ones are willing to hear their experiences and meet them where they are, there is an immense relief. It can be challenging for you to understand what they are feeling and uncomfortable for them to explain it. This is why living with a chronic illness can feel isolating and lonely.
Impact on daily life
While chronic illnesses vary widely, they share an unpredictability. There are a number of difficulties that someone can encounter on a daily basis that others may not be aware of, such as managing a medication regimen, factoring in medical appointments to busy schedules, and rearranging plans or their entire day in the event of a flare-up. For some, symptoms may interfere with the ability to show up to or stay involved in a social activity. For example, those with irritable bowel diseases may be considering how certain foods, drinks, or activities may prompt or exacerbate symptoms, and need to ensure access to a bathroom. While COVID-19 restrictions have largely been lifted and most have resumed their day-to-day lives, people living with chronic illnesses, specifically those taking immunosuppressant drugs, are at higher risk and therefore still require additional precautionary measures. This may prove difficult for others to understand or accept, leaving people feeling misunderstood.
Do’s and dont’s
Learn, don't assume. Acknowledge any biases you may have and be open to learning more about how this illness affects the person. Empathize and sit in the feelings with them rather than trying to fix it right then and there. It can be hard knowing that a loved one is in pain, which is why people often jump to offering advice or solutions. Comments like “why don’t you do X differently” or “look on the bright side” show a lack of empathy and may indicate that you’re feeling uncomfortable. If you are uncomfortable, you’re not alone. Acknowledging your own feelings of helplessness is an important step in coping with the situation and making room for the person’s feelings. Holding space – which is being emotionally present without judgment – can make the person feel safe and understood. Make sure to give them grace, meaning do not hold them to a prior standard. Recognize that they may not be able to show up as they used to. Check in and offer help, and don’t avoid reaching out. Remember, just because you can’t see it doesn’t mean it’s not there – many people have learned to live with and hide their pain.
Finding the right resources
I would recommend seeking a local support group for people living with chronic illness or for family members of people living with chronic illness. Educate yourself on the illness through reputable sources and read about success stories of people who have been treating and managing their illness. Sometimes the only stories we are exposed to end up contributing to the sigma of certain illnesses and don’t paint a full, accurate picture of reality. It is important to unlearn some of this and expand our own knowledge.
Gaining a better understanding and remaining open to learning, listening, and holding space will go a long way in helping your loved one feel supported.
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