One of the big differences between ’being sick’ and dealing with a chronic condition is how your relationships and activities are affected. If you’re sick, staying home and resting up IS a great idea. Sure, you may miss one or two activities you were looking forward to, but you’ll feel better and get back into action sooner if you rest. However, when dealing with a chronic condition, it becomes a matter of comparing the cost of going out(and there is one), to the cost of not going out(which is often loneliness and isolation, and missing out on cool opportunities!), and consciously deciding which one is more important for you in the moment. Many people with disabilities often feel isolated and alone. We often are left out of, ignored during, or are unable to attend significant events, or are not invited in the first place! Day-to-day living is often challenging and makes doing ‘extra’ things like social activities that much more difficult. That does not make socializing less important for our health and well-being, and it adds urgency to remaining connected to our loved ones during a time when most life-patterns have been disrupted.
The reality of living with a chronic condition or disability
One of the things that happen very frequently to people with disabilities, is that we miss out on the fun. We participate in fewer activities. We go out less often. We don’t have friends over as much. Eventually, we might not have as many friends as we used to.
Sometimes those friends can be a painful reminder of what you lost with your illness, injury, or diagnosis. It can hurt. But – it hurts more to not have anybody to share your life with. It often hurts more to feel lonely. We, as humans, are social creatures, and we crave contact. Not having those social interactions and activities will be much more damaging in the long run than whatever costs are associated with going out. Exhaustion, pain, or discomfort are shorter-term sensations, and often being part of a community is a huge step towards healing yourself. Also, often friends and family members might be uncertain about inviting you to things or trying to spend time with you because they are uncertain if you can or want to participate, or because they are unable or unwilling to make the accommodations necessary for you to take part. There also is an instinct that many of us have that if we know somebody is sick, we are less likely to socialize until they are better. Disabilities and chronic illnesses are often viewed as similar to being sick, even though there are some very important differences.
Don’t fall into social isolation
Not being invited to events is depressing and sad. Frequently deciding not to go to events is a great way to not be invited to future events. Making choices that cause us to miss out on our social opportunities leads to social isolation. Social isolation often leads to depression and anxiety. Depression and anxiety make going out even more difficult. It’s a negative and self-reinforcing cycle. If you aren’t connecting with your friends, they are less likely to remember to invite you to future events. If you don’t go out, you don’t meet new people or you lose connection with your friends. This leaves you with fewer people to interact with and a lower frequency of being invited to things, so you don’t go out as much…yeah, that’s not a pattern you want to fall into.
There is going to be some attrition on your actual friend list – the people you spend time with – as they cope with whatever condition or illness you have. If you stop going out and doing things, that process is more dramatic. The better you are at maintaining your prior social patterns, the more likely you are to maintain and grow more friendships. Losing some friends, or at least having more distance with some friends, is practically inevitable. So you need to be proactive and protect yourself from this problem by going out anyway!
Be realistic about what you want to participate in
Your condition has affected your life and quality of life. It likely has also affected how you are able to interact with people and the activities you can participate in. There will be some activities you no longer can participate in.
For example, I no longer drive. When I was mainly dealing with urinary symptoms, driving was okay, but once I started having full-body shaking episodes, I felt that driving was a bad idea.
I tried driving when I felt like I had better control, and quickly learned that I didn’t. My feet started stamping when I turned a corner a little fast. I was unable to hit the brakes and frightened that I might accidentally hit the gas. I had my boyfriend at the time drive up with his mother to pick me and my car up that afternoon.
After several more attempts to drive, then having symptoms either injure me or upset my fellow drivers, I started doubting that driving was such a good idea.
I had many days when I could drive to something(like a part time job), but then realize that I was not good to drive home. I quickly learned that it was often much more challenging to have two drivers come help me and get the car than simply getting a ride to the event.
I have made peace with not driving, and have learned a lot about my area’s public transportation system, gotten comfortable planning trips with people, and have generally developed a good sense of my limitations and how I can navigate public transportation.
I no longer expect myself to drive again, and focus my energy instead on utilizing the other options out there, enjoying the activities I do participate in, and finding friends with common interests willing to bring me along to things!
What you need to do for yourself is to decide what activities you can and want to participate in, and what it will take for you to be part of it.
Even if you can’t go out hiking with your friends anymore, you likely can still go out for a meal or coffee with them. You may not be able to go to that concert you were looking forward to, but you can still go out to the beach, or see a different type of performance.
This will mean getting creative and doing things with friends that might not have been your usual thing, but if it’s a strong friendship, that probably won’t matter.
Your family is also going to have an impact on this. Whatever traditions or events your family tends to hold – both seasonally(like thanksgiving celebrations or birthdays) and on occasion(weddings or funerals or coming-of-age ceremonies) – are important to attend and may require adjustments on your and your family’s part.
For example, I just came home from participating in a wedding(my cousin’s), and had a wonderful time being part of her special day, and seeing members of my extended family that I hadn’t seen in years(and some of the younger members I had never met before).
The wedding was halfway across the country from me, but after some consideration and planning, I was able to attend – as was one of my sisters, who is living with the effects of two brain injuries!
Being realistic does NOT mean giving up on your dreams
If there is something you really, passionately want to do, but it would be challenging- you still may be able to do it if you plan and prepare appropriately. Your condition may end up helping you realize how important certain activities are to you and what you really value. When I talk about being realistic, I am not saying to give up on your dreams or your strongly held desires. Instead, I’m suggesting that you consider each potential activity more by how much you want to do that thing, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You are going to eventually find a ‘new normal’ and know your body’s limits, and what is or isn’t worth the fight. Be conservative in your planning at first, so you can learn what your limitations and capabilities really are. Be aware that those can also change somewhat regularly, especially as you heal(or get worse) or try new treatments, but you do have every right to push your limits and try to do the things that are important to you. The important part is to figure out what that looks like for you – sometimes what you think will be super easy is actually one of the most difficult, and vice versa. If you really value participating in something, it may take some planning and sacrifice, but you likely can do the things you really want.
Ask for the accommodations you need
Often you can participate in something if certain accommodations are made, or if you plan ahead carefully. I am all about thinking these things through. In my case, I know that any problem, issue, stress, or excitement I feel will likely increase the likelihood or intensity of my symptoms. So when I’m going to an important event, I go anticipating that at some point I will be symptomatic. The location doesn’t need to adapt to me, but the people around me need to know that I am not in danger or need help. They need to be aware that I have movement symptoms, that they are not completely in my control, and that there is nothing they need to do about it – I can and will get it back under control again. I try to bring things with me to mitigate the potential damage – currently, that means that I carry gum with me everywhere I go and usually carry a couple of migraine pills and this little aromatherapy lotion that can minimize headaches. Now that I have migraines somewhat often, I need to be prepared to treat them before they get bad. I also have been dealing with a symptom where my jaw starts slamming shut, holding closed, and sometimes my mouth opens incredibly wide and won’t close for a bit – somewhat like a yawn but much less natural looking. I have found that chewing gum tends to keep those symptoms at bay, so if they start happening, I start chewing some gum and so don’t end up with as achy a jaw the next day(and don’t look as strange). In the past, I have also carried around pain meds(usually just Tylenol or similar), creams for muscle pain, an inflatable neck pillow, and I usually carry around my phone and something else to entertain me(coloring book and pens, my kindle, my Chromebook…anything that will keep me occupied if my phone’s batteries get low).
In Al’s case, the accommodations he needs are about expectations. He will be using a cane but doesn’t need additional assistance. He needs the activity to be relatively close to home – we will gladly go out for dinner if the restaurant is less than forty minutes away, but plans that involve longer distance traveling are not an easy option. Whatever we are doing needs to not involve climbing too many stairs – elevators and escalators are fine, but we can’t come to your fourth-floor walk-up, or climb up a lighthouse, no matter how pretty the view is. Al also isn’t comfortable walking long distances so he isn’t going on a two-mile hike or doing a walking tour of the city anytime soon. He also needs to be able to change positions regularly – if we go out to eat, he needs to be able to get up and walk around. If we go to see a show or play, he needs the intermission, and maybe to be able to stand to watch the event for part of the time. When he attended his bookkeeping class, he could only sit at the computer a certain amount of time before he needed to stand for a while, and he’d need to walk around a bit most breaks. This is all manageable but does require thinking ahead. We’re not going to go to a standing-room-only event. If we know we’re going to be running around a lot, Al might need to plan on taking pain medication, or on having minimal responsibilities the next day so he can recuperate. Since he broke his hip, we’ve gone to multiple family occasions, but he has at times needed to leave early, arrive late, sit more often, or change positions more. He did not attend the wedding, as we realized that no matter how we travelled, he would be spending at least six hours in transit – he couldn’t drive himself, and traveling with my sister and her wife would be tight and uncomfortable, and flying would require two straight hours in a seat, plus the time and effort involved in security checks and transportation to and from each airport. Physically, he could have done the trip, but he would have been in so much pain from everything that he would not have been able to enjoy the wedding.
My sister is dealing with multiple sensitivities, pain issues, and balance issues. She wears wrap-around sunglasses when outside and her glasses underneath are rose-tinted to help her manage her light sensitivity. She is also noise-sensitive, so usually carries around earplugs of varying degrees of noise control so she can comfortably enjoy an event. She has a cooling vest to help her handle the heat, and a balance vest to work against her body’s tendencies to lean certain ways(counterbalance weights). She needs to have time to rest between events and fatigues easily. So when she attended the wedding with me, she would do breakfast with our family at the hotel, and then go back to her room to rest before getting ready to attend the wedding in the afternoon(and the wedding shower the day before). We also arrived at the hotel a day before the rest of the family so she could spend a full day resting before the social opportunities started happening. She knew that she would get tired and need to leave the reception early, so planned for that. Also, the wedding itself was outdoors and in the sun, so she sat in a shady area for as long as possible before the event, then sat in the shaded space for the family during the wedding itself. During the reception, she sat as far from the speakers as possible and used her earplugs much of the time. She was still able to hear some of what was happening and was able to choose times to take them out and have conversations with specific people.
Make sure you go out and have fun!
Being distracted by your friends reduces your stress and anxiety which will often reduce the intensity of any symptoms you have. Focus on the fun you’re having and you can have a good time. Whatever your condition is, and whatever effects it may have, there are still things that you can do and that you can enjoy. Maybe you won’t last as long as you normally would, maybe you need some additional supports or accommodations, but if you think creatively and have an understanding friend or two, you absolutely can still go out and have a great time.
If you are part of an emotionally healthy family, make sure you keep participating in family events, possibly even trying to go to additional ones that you may not have attended in the past due to other commitments. When your family is supportive, participating in family events can be one of the best ways to maintain your social connections. Families tend to have a wide age range(elderly adults and small children are usually participants in large family events), which means the events usually have some built-in flexibility of expectations, and more opportunities to find a quiet corner or sit down and rest, or whatever accommodations you may need, without it detracting from others fun. Usually, family events have an ebb and flow, and times that are especially significant or the crowning event. You likely can plan things so that you are part of those moments, even if you are unable to do everything you used to.
Conclusion: Disability and loneliness are often interconnected
You can still have a social life after your injury, trauma, or diagnosis. It is possible. No matter how severe, there is something that you can do to keep having a social life, whether it is through maintaining friendships, increasing family ties, or finding new friends. The important thing is that you can find ways to keep yourself connected with your loved ones, and there are things that you can do and things you can request to make sure that you can stay connected. Think about what your needs are and what you can do to see them met. Communicate with the significant people in your life about the accommodations you need to participate in events. You deserve to remain connected to those you love, and you can take actions to help yourself stay connected. Protect yourself from isolation and loneliness by reaching out, thinking ahead, and recognizing your needs so you can have them met!
What events have you wanted to attend? Did you find a way to? Please share your stories with me, I’d love to know!