On Friends and Family

Something strange often happens when you have a chronic illness or live with chronic pain. It can build a wall between you and others. It can cause loneliness and isolation, neither of which help the fragile emotional state that living with a chronic condition can cause to begin with.

I launched this blog last week and sent the link to those closest to me. I received the sweetest text back from my sister-in-law, but it also made me sad. We’ve known each other for almost 12 years now, and after reading the blog she said “there’s so much that I don’t know about you because your headaches keep us from getting to spend quality sister time together and getting into any real deep conversations”.

It’s true, there are so many family get-togethers that my husband goes to without me because my migraine will be so bad that I can’t get out of bed. I hate this more than anything. These are the times that I feel the most depressed, laying in bed, missing out on family time. I pray that people don’t think that I’m ever just saying “oh I have a headache” just to get out of socializing. I may be an introvert but my headaches keep me home enough, and I actually crave that family time.

But its more than just missing out on time with family and friends. When I do get to spend time with them, it’s often hard to be open and honest about what’s really going on with me. If I did tell someone how awful I really feel, most people don’t know what to do with that. They don’t know how to respond and it just makes things awkward. I don’t ever want to make anyone feel awkward, so more often than not, when people ask me how I’m doing, I respond with “good!” and try to change the focus of the conversation to them.

The fact that I’m not sharing how I truly feel makes me feel inauthentic and disconnected but it’s often easier than trying to navigate the awkwardness or feeling like a Debbie Downer all the time. I don’t want to make people feel sad or sorry for me and I know that it can also be really frustrating for those closest to me to feel helpless because they can’t fix the situation.

It can also be hard to try to explain everything that’s going on with me. While I get first-hand explanations for my diagnoses from doctors and do my own research on my conditions, trying to explain some of the complicated medical jargon to others who have never heard of or experienced anything like I’m going through for themselves, can be really difficult.

For example, last year I was diagnosed at Johns Hopkins with something called POTS. Could there be a worse name for a medical condition? I feel slightly stupid when I try to tell people, “yeah, I was diagnosed with something called POTS”. It stands for Postural Orthostatic Tachycardia Syndrome. I always follow up with that and people are often like, “what??” Furthermore, trying to explain what it means for my body, that my autonomic nervous system is not functioning right, and is constantly in fight-or-flight mode, is more than a lot of people are ready to take in. I don’t fault anyone for this, it’s taken me multiple doctors appointments and researching on my own to understand.

Then there’s also the fact that I’m just plain exhausted from the constant pain most of the time. I already feel like I have a gas tank running on empty, and socializing requires energy that I often feel like I just don’t have. Navigating a family get-together or party when your body is fighting pain can be really hard. It can make me feel like I’m in a fog, and I don’t really want others to see me like that.

But the isolation and disconnection that avoiding others altogether can cause can be really depressing. So while I do try to respect my body and stay home on really bad days, I often push myself to go out if I’m feeling mediocre or sometimes even on a bad day. The trick is modifying things so that I don’t push myself too far and end up paying for it later. When you have a chronic condition, pushing yourself to do the same things that a healthy person can do, often results in a pretty bad flare-up in symptoms, often requiring the person to have to stay in bed feeling awful the following day or even for a few days while their body recovers. It’s taken me years to accept that I often cannot do what a healthy person can. I’m stubborn, and I’ve paid for it time and time again.

But what I can do is modify my activities to allow me to still spend time with those that I love, but at my pace. I recommend that anyone living with chronic pain or a chronic health condition try to come up with a game plan for allowing you to interact with the world, but on your terms.

If there’s a social event that I want to go to with my husband, I’ll talk to him about the option of leaving early if I need to. If it’s something that he really wants to spend more time at, I’ll drive separately so that I can bow out early if I need to but he can stay and enjoy himself. We used to carpool with friends or family to things like weddings or parties, but this is something we rarely do anymore, as we’ve learned that I just can’t last as long as most people. I still want to go and try to have the best time that I can, but I just have to modify things a bit to respect what my body can and cannot do.

I’m really lucky to have a few close friends who really understand my body’s needs and are very understanding if I have to cancel plans because I’m not feeling well. Two of my best friends have chronic health conditions of their own, so I don’t even need to explain this to them, they already get it. But if your friends are more able-bodied and healthy, try to explain beforehand that you want so badly to spend time with them, but chronic pain can be very unpredictable, and just because you are planning a fun day with them, your body may decide its not on the same page when that day comes.

If I was still 100% healthy, I would probably plan nights out for dinner and drinks with my friends, but unfortunately, my body doesn’t do very well at the end of the day, and alcohol tends to make me feel not so great. So instead, we’ll plan to meet up for lunch or if I’m not feeling the best, my friends will bring lunch to me, and we’ll hang out at my house that day. That way, I can still spend quality time with them, but it’s not so taxing on my body.

I think that one of the hardest things about loving someone with a chronic illness has to be seeing them suffer and feeling like there’s nothing you can do to help them. While you may not be able to make their pain go away or cure them, there are so many ways that you CAN help them.

Check in on your friend or family member, especially when you haven’t heard from them for a while. Chances are, they’re going through a tough time and haven’t had the energy to reach out to you. Trust me, it’s not that they don’t want to, but these times can cause us to feel depressed which makes us less apt to reach out, even though human interaction might be just the thing we need to cheer us up. They may not even have the energy to talk on the phone, but a simple text might be just what they need to know someone is thinking about them. Try to not take it personally if they have to cancel plans, I can guarantee that they feel awful about it. Let them know that you hope they feel better and are ready to hang out as soon as they do.

One of the most powerful things I’ve read is a quote by one of my favorite authors, Glennon Doyle. If you like to read, I recommend that you check out her book, Love Warrior. She talks a lot about pain and how our lives would change if we stopped being so afraid of pain. She has this amazing quote about friendship,

“If we stopped being so afraid of pain we would become the kind of friends our people need. We don’t need our friends to try to fix our pain – pain, like joy, is holy. We need friends who are brave enough to be still with our pain, who will sit — stunned and sad and powerless — with us. Because friendship is just two people not being God together.”

I love that so much. When I first got sick, I felt like I lost a lot of friends. And I don’t blame anyone. We were young, and they didn’t know what to do or say to help me. So it was easier to just drift away. This happens a lot when people have a chronic condition. I also have friends who have lost a loved one, and they’ve told me that people are supportive at first, but also start to drift away, because they don’t know what to say or do to fix the hurt. That’s the thing. We don’t need our friends to fix our pain. We just need them to sit with us. To sit with us and say, “I see your pain. And it sucks. But I’m here to listen and I’m not going anywhere”.

I’m really lucky to have some amazing friends and family who have been brave enough to say this and to stick by my side. And I can’t thank each of them enough. If you know someone who is going through something difficult, I hope these tips might help you to be brave enough to sit with them in their hurt. They need you, and I promise you are strong enough.