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Keeping a social life with cluster headache

Keeping a social life with cluster headache can be extremely difficult. Cancelling plans last minute can lead to feelings of guilt or even losing friends and loved ones. How do you manage this?

Disclaimer; I am in no way a healthcare professional. Everything I discuss here is based on my personal experience. What I describe are my personal experiences and opinions. What you do with the information on this site is entirely up to you. Things that have worked for me might not work for you, as everyone is different. I would always advise you to keep in contact with your healthcare professionals and be honest with them if and when you decide to try some of the things that I have done.

Keeping a social life with cluster headache wasn’t that hard at first

When I got my diagnosis I had just moved out of my parent’s house, and in with a friend from school. We had our own apartment and were just finding our way in adulthood. Our home was in a little village just outside the city, and our school was located in the heart of the city. By bus, it took us about 30 minutes to get there, and by bicycle about an hour or so. Our building was sort of a student flat, and we were close with our neighbors. Due to this social network inside my building, keeping a social life with cluster headache was at that point doable.

Flatmates

My flatmate and I got along very well, and he knew all about my cluster headache, so did our neighbors. Often I would ask him to inject the sumatriptan injections, as I did not dare do it myself. He’d always help me out. When he was not around one of my neighbors would help me.

A lack of understanding

After about 6 months of me having 8 attacks per 24 hours, we needed to get to class. We decided to go by bike. Halfway during the trip I was far behind. My flatmate stopped and waited for me. “Why are you taking so long?” he asked. I was flabbergasted. Did he not live with me? “Because I barely sleep and only have pain all fucking day” I angrily said.

My flatmate didn’t do anything wrong, and I don’t blame him. He was just young, but this illustrates perfectly that our environment, our friends and loved ones, even when they live with us, never fully understand what it is that we go through. Only a few will truly understand how hard it is.

Now keeping a social life with cluster headache became more difficult

This is exactly why I decided that I would let everyone in my life experience me having an attack. Showing my friends and family exactly what an attack is, had at that point become necessary. I had moved out of the flat, and with that my social network was no longer down the hall. I needed to once a gain make plans in advance and found myself canceling all the time due to the attacks. So keeping a social life with cluster headache became more difficult. Showing every one resulted in my friends and family having more understanding and not be as upset when I needed to cancel plans due to an attack. For me in turn it relieved me of the guilt I would feel prior to me showing my disease.

The key is to have your loved ones witness a full attack, and not quickly shooting sumatriptan or taking oxygen. That will downplay the severity of the attack for them. Let them get uncomfortable.

A possible downside

Having everyone know what a cluster attack looks like helps with getting some understanding. It makes keeping a social life with cluster headache easier. What it also does, is make people ask you constantly how your clusters are going. And most of the time it will be the first and maybe even only thing they’ll ask about.

Friends

This of course this is always coming from a good heart, but I noticed that I did not always want to talk about it. That’s because talking about it can be a negative experience, giving negative energy to the cluster. So I only talk about it when I feel like it. Otherwise, I will quickly say it’s fine and change the subject. And when someone persists, I simply tell them I do not wish to discuss it. This in turn gives me control over the subject of cluster headache, and in time it will help in people seeing you for you, and not for your clusters.

Choose where when and what

Something that took me a while to learn was that I now had to choose where when and what I wanted to do, that I could do. Before cluster headache, if something, an opportunity, friend or whatever came up, and I had time I would almost always say yes and go. Now with cluster headache I still wanted to do that. Attacks be damned. I could use sumatriptan if needed. But I quickly learned that it didn’t work like that. Having 8 attacks a day made that after a short while I simply did not have the energy. This also made keeping a social life with cluster headache more difficult. I needed to regulate my energy.

Then, when I quite the sumatriptan and oxygen, I had to take into account that when I would have an attack I could be out for 3 hours, and maybe if things went terrible, even longer. Of course, I could still take the injection as a precaution and quickly head home, but it made going out and keeping a social life a lot more difficult.

How do I do keep a social life with cluster headache now?

With time, I learned that the best thing I could do to keep a social life with cluster headache, was look at my agenda before making a decision. Do I have the time? How am I feeling at the moment? Can I get home easily enough if needed? What if I have an attack there how will it affect my plans for after the event I’m going to?

Going to friends and family are always the easiest. They know my situation and if need be I can go into a separate room and sit out my attack, and if I would be totally broken afterward they could bring me home. But these were all things I had to make them aware of and willing to do for me.

Festival

When I’m not at a loved one’s home, but in a social setting like a festival or something, I’ll always go with someone that knows about my cluster headache and who is willing to separate from the group with me in order to keep people at bay if needed. On some cluster headache forums you can also find printable forms that inform what condition you have and what people should do or who they can call. Those can be very helpful too!

Put yourself first and set boundaries

Earlier I talked about the need to put yourself first. That also applies to the social aspect of life. As everyone knew me as a person that would be up to go, they sometimes did not expect and understand me saying no. For me, it was difficult because I too wanted to go. With my husband have I needed to set boundaries too. You can read more on relationships and cluster headache here.

It always helps when you explain why you can’t or won’t do something/go; No I do not want to come to that birthday, because the room will be crowded and noisy and that has a bad effect on me. Or No I can’t go because I just do not have the energy. Difficult things to say, because you feel like you are letting them down. It took me a great deal of time before I finally started to be comfortable saying no.

Maybe I’m not telling you anything new here and have you already done something similar. If not then I hope this will help you to create more understanding for your situation among your loved ones.

In the next post I will discuss generating income with cluster headache.

Remember friends, you ALWAYS win!