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Overcoming Loneliness in Chronic Illness

Managing a rare disease takes time, but don’t let it crowd out social connections and spending time with friends and family.

Friends on the soccer field arms around each other's shoulders

Loneliness takes different forms and it means feeling socially or emotionally disconnected from others. Research has shown living with a chronic health care condition – and especially rare disease – is among the highest risk factors for loneliness. As a primary immunodeficiency patient, I know the experience can be inherently lonely. No one but you can know what it is like to live in your body and with the feeling that it has failed you.

The solution to loneliness is social connection and, fortunately, I can recommend some concrete steps to help you stay engaged with family, friends and even casual acquaintances. More to come on that.

But let’s first talk about time. There never seems to be enough of it, and managing a health condition eats up a lot of it. Appointments, treatment regimens and time spent resting or recovering can take us away from doing the things that we love and being with the people we love.

Often the interventions required to keep us alive and well are not only time consuming, but uncomfortable. This is hard for able-bodied individuals to comprehend. They might know about familiar diseases like cancer or diabetes and what goes into managing them. But they won’t know about rare conditions, which are frequently misunderstood. The resulting lack of validation and understanding can leave you feeling alone and, yes, lonely.

On top of that, the time we spend getting health care doesn’t result in a sense of accomplishment the way other tasks do. For instance, you go to work and you get the satisfaction of a job well done and you earn a salary. You clean the kitchen and you can enjoy the sparkling results. But managing a health problem usually means you are expending energy in pursuit of a level of health that comes naturally to a lot of people. Further, a health problem can keep you from pursuing a dream and the joy of living out your purpose.

But you can combat loneliness in all these forms. Ignoring it won’t make it go away,  even though we might want to pretend it doesn’t affect us. So, step one is acknowledging loneliness and its pernicious effects and deciding to address the problem in a conscious manner. Here’s how to get started:

Time to brainstorm. Think about the specific ways in which loneliness is manifesting itself in your life. Here are some common impacts:

  • Social isolation and lack of connection
  • Too little understanding and validation
  • Missing purpose and meaning

If we know how and why we are feeling lonely, we can respond with changes designed to address the specific hurt that we are feeling.

Think about the special people in your life, their strengths and why these relationships are worth the effort. Make this an exercise of figuring out who to prioritize and how to strengthen these important connections so they have a place in your life.

When the problem is social isolation and lack of connection: We are biologically wired to desire social connection, close friendship, romantic partners, a sideline pal to sit with as you watch your kid’s soccer game. Here’s how to move the needle on your social life:

  1. Prioritize making and maintaining connections and look for ways to gain more social time. Put it on your to-do list in the same way you manage other important responsibilities, like caring for your physical health. More social connection time is an investment and a foundation for securing mental health and stability.
  2. Explain – or re-explain – your limitations to friends and family members. Ask willing folks to meet you on your terms. No one wants to be seen as a burden or rigid, but with a little more explanation and a direct request, the right people (those to whom we are a priority) are likely to show up. Often these people want to help and stay connected with us – and they will make an effort because they care and value having us in their lives.

Loneliness from a lack of purpose: You may not be able to work (or to do the work that you find most meaningful), and you may not have the free time to engage in hobbies and recreation as you would like. This can lead to shifts in identify and feelings of isolation.

We all need to have a sense of purpose outside of managing our health care. Find something that grounds you which can provide you with purpose, meaning and satisfaction. This could be re-engaging in a hobby with modifications, finding a peer group to advocate for your illness, or joining an online book club. Your physical limitations and time constraints may impact what you can do, but there is always room for growth. Reassess what you enjoy and find a way.

When the problem is that other people don’t understand: This is a big one. Some people won’t get how chronic illness impacts your life daily nor do they seem that interested in finding out. This can make you feel resentful and disconnected. For those folks, be judicious about what you tell them and keep setting boundaries.

But there are others who are interested and might just need you to explain it again. Medical terms are familiar to you but they won’t be for everyone. Be patient and consistent in your messaging. Share the same information more than once and forgive them if they don’t retain everything you said last time. Ask gentle questions to check their understanding of what you said. Dialogue can be clarifying for both of you.

Keep health updates simple and educate them about how your abilities might fluctuate – something able-bodied individuals might not understand. One day you are up for a long walk; the next day, you aren’t.

By taking these steps you are making the wise decision to invest in quality relationships. I guarantee some people in your life will be willing to step up. Together, you can enjoy the reassuring gift of family ties and long friendships.