09/08/2022
The Chronic Chronicles
Having a Friend with a Chronic Condition: Challenges, Tips and Considerations
Having a friend with a chronic health condition can be a challenge at times. You might feel helpless, concerned, saddened by the constancy of their condition and unsure of how to help. You might even feel a sense of compassion fatigue as you regularly validate their pain, ask how they are and offer help. If you are already a person who is a caregiver, having a friend who is disabled or suffering from a chronic illness can lead to burn out. However, it doesn’t have to, and learning about the chronic illness community, being aware of the tendency our society has towards ableism and toxic positivity can go a long way in managing expectations both for ourselves and our friends who have health challenges.
Life Balance
So how do we balance caring for ourselves, going to work, caring for our families and be a good friend to someone with chronic illness? The balancing act might feel insurmountable at times, and guilt may set in, as if being healthy in the face of someone else’s suffering is too much. Perhaps you too have a disability or chronic condition, but it is not as severe or as limiting as theirs might be. It could feel difficult to share your experiences without feeling that you are invalidating theirs. It is okay “to not be okay”, and to be compassionate and empathic without feeling the need to offer suggestions or help them solve their problems. Being honest about what you can and cannot provide in terms of concrete help and time constraints is better than offering generalized help and advice that you cannot follow up with. Just being able to provide space for the expression of feelings is usually better than giving advice, unless your friend specifically asks for it. The chronic illness community has the experience of having to listen to unsolicited advice and suggestions on how to “get better” on a regular basis, so having a friend just offer space and validation is a huge help. This doesn’t mean that concrete help like assistance with meals, errands, household tasks and other life issues isn’t wanted or needed, it is; however, the ability to just be present without wanting to fix their condition is extremely valuable.
Share Your Struggles
Know that your friend appreciates you sharing your own struggle. Many people need to vent about their feelings regarding their condition, but may get tired of talking about it, and it can be helpful for them to hear about struggles with your own health issues, even joking about your illness or theirs. It can be cathartic to find humor in our broken medical system by making fun of doctor visits that didn’t go well, comparing stories about embarrassing tests, physical symptoms or encounters with people who don’t understand what it’s like to live with a chronic condition or disability. There are numerous social media accounts that make fun of the absurd and ridiculous circumstances associated with having an ongoing illness and disability. Online support groups often share funny memes and stories that most healthy people might have trouble understanding. Learning about the chronic illness and disability community can be a helpful way to relate to, and support, your friend. Being able to “speak the language” of chronic illness is validating and shows that you have taken the time and effort to learn about their life.
Let Your Friends Know You are Thinking About Them
Letting your friend know you are thinking about them, even if it's a short text, or a funny meme is appreciated. People who have physical limitations often find themselves alone a fair amount, waiting for doctors appointments, being in the hospital and waiting for diagnoses or the results of testing. Hearing from friends during these times is a big boost and helps them feel less alone. In addition, learning about their condition and how it affects them on a daily basis increases a sense of being understood, as it can be exhausting to have to explain it over and over again, as they do for numerous medical appointments, family members, co-workers, bosses and others.
Be Understanding
Those with chronic conditions often can't attend events, but appreciate being invited. Invitations, with the understanding that your friend may not be able to come, can be a big boost. It helps to know that they are thought of, and valued, as many ill and disabled people worry that resentment will build with their friends. Especially when they are invited somewhere repeatedly, not able to attend, or having to cancel due to a flare or other health related issue. The disabled and those with chronic conditions are like anyone else; wanting to participate in life’s events but having to cancel last minute, or not having the means or ability to make a trip. In addition, some events may not be accessible for those with wheelchairs or mobility aids, so being aware as to whether an venue might be difficult to maneuver can help someone make an informed decision about whether or not they can attend, or if they can attend, whether it will be safe. Many disabled and ill people may have limited incomes, difficulty traveling, or have symptoms or conditions that vary from day to day or hour to hour, making it difficult to plan. They often feel anxious about this and feel they are letting their friends down by changing plans with short notice, so it is helpful to know that you want them there if they are able, but understand if they cannot, in addition to providing information about the event and venue.
Managing Difficult Feelings
Sometimes, having a friend with a chronic illness or disability can bring up difficult feelings. Being able to recognize early on when you become resentful, sad, tired, or overwhelmed can be helpful in maintaining a good relationship. There are times where you might feel heavy or depressed hearing how much pain they are in or how lonely they are. Being honest with your friend might be hard but can be enlightening for both of you. Letting them know you hear and empathize with them when they express their feelings is important, as well as letting them know how you feel. Most of the time this can lead to deeper conversations that explore subjects you might not otherwise explore with an able bodied friend. It can be really important to ensure that you allow them to support you as much as you support them. Just because they may not be able to provide you with the same type of support such as running an errand, cooking, or doing a physical task, they are often great listeners and able to understand the depth of feeling at a level others may struggle to understand.
Remember
Chronic illness seems to be more and more prevalent, with many conditions not easily recognizable by physicians and the medical system, leaving patients feeling misunderstood, invisible and suffering until a diagnosis is found and treatment begun. Often diagnosis can take years and in the case of rare disorders, few treatments may be available. While not everyone will have a chronic illness, a rare disorder or disability, almost everyone at some point will have a health issue they will have to cope with. Remembering the ideas in this article for communication, learning about the chronic illness community, and maintaining a self care balance may be helpful as you navigate your own condition as well as those of others. Don’t forget that your ill and disabled friends value you in their lives and you are an important part of their support system. In addition, your friends with health challenges can add a significant value to your life by sharing experiences and thoughts about living that you might not have had otherwise.
Greta MacMillan, LCSW
