Keeping up friendships when living with a chronic disease like systemic mastocytosis (SM) can be hard. You may feel like you don’t have anything to say that won’t drag the conversation down, or you might worry about finding yourself in a situation that triggers your symptoms. But don’t let SM define you. Though chronic illness can affect what your life looks like, maintaining friendships is still essential for your well-being and mental health.
Why do people with chronic conditions lose connections?
A chronic disease like systemic mastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults. can make you feel like you don’t fit in anymore.
Whether it means hiding embarrassing skin symptoms or keeping a long list of health problems out of the conversation, many patients don’t feel like they can be their whole selves around others anymore. Hiding these problems in an effort to fit in can make people feel lonely and unsupported.
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Living with SM also means dealing with fatigue, brain fog and other symptoms that make the effort of spending time with friends a challenge. Old activities you did together might be off the table, and meetups might be cancelled last-minute when symptoms flare.
A feeling of being different or uncomfortable with the body limitations and consequences of your disease may cause you to self-exclude from social situations.
What can help maintain friendships?
Every friendship is unique, but these suggestions offer a place to start when strengthening or rebuilding connections.
Explaining how your disease affects your social life
Share information about SM to help your friends grasp your situation. Knowing the basics can help them understand why you may need to cancel plans or ask them to avoid perfume when you spend time together. You don’t need to explain everything in detail, though, and can shift the focus to other topics of conversation after if that feels right.
Keeping meetups flexible
Flexible plans will help you adapt the day to your needs. You could plan having a phone catch-up as a backup if you’re too tired to join a friend on a morning of thrift-store hopping, or choosing an outing where it’s easy to take breaks.
If you’re easing back into socializing after a diagnosis, start off small. Choose the right person for a one-on-one coffee and chat.
Avoiding symptom triggers
Avoiding triggers will make socializing easier. What that means for you will all depend on your symptom triggers. For some patients, it may mean hosting friends for a movie night at home where they can control the temperature, scents and snacks. For others it may mean asking to pick the restaurant on nights out to guarantee a trigger-free menu.
Sharing how friends can support you
Be honest with friends about how they can help. People want to support those they care about.
Read a patient’s story of support: “Someone in my corner: Leaning on friends through sickness”
Why maintaining friendships is important when living with chronic disease
Social isolation isn’t good for anyone. While you may feel flat and disinterested in social activities at times, maintaining friendships has many benefits:
- Emotional support.
- Better mental health.
- Practical support for daily needs.
- Distraction from health issues.
- Feeling normal and connected to others.
Keep in mind that some friendships may fall away after an SM diagnosis, whether it’s because heat and insects keep you from joining your gardening club or because a friend can’t understand the unpredictability of your symptoms. However, the friendships that last the distance — and the ones that matter — will be with those who are based on kindness, understanding and mutual appreciation.
Read a first-hand account from a patient about the struggle of maintaining friendships with SM: “The cost of canceling plans: Feeling shamed when I need support the most”
