Living with chronic pain is annoying enough. Yet apart from the pain, you often also have to deal with reactions and thoughts from other people. How do you tell your social environment about your complaints? And how do you as a bystander deal with someone who suffers from this? Jennifer (25) explains.

I can imagine that it is difficult to communicate with other people about your complaints. How do you deal with this?

I actually tell it very easily. I think everyone knows about it in my immediate environment, to a certain extent. I think the friends who are closer to me know more about it and know better how to deal with it. People also know that sometimes I have to cancel things last-minute, but they also know that I do not like to do this. I regularly see my parents, who often come to visit me. With my mother I can talk about it, I talk a bit less with my father, but I can also talk to him about it if I want. I often just need someone to listen to me for a while. Most likely people do not quite understand my pain, but they keep it in mind, and try to be there for me when it is needed.

So you mainly have positive experiences with this?

Yes. Of course, I do not know whether they talk behind my back, but I do not think so. I have nice friends. Also honest friends, so that’s nice. I have never actually had a negative reaction to my pain. I can not do anything about it myself and I find it irritating myself. That’s why I understand it completely when other people find it irritating, but they will never talk negatively about it to me. They are not angry, they just think it’s a shame when I’m not there, and so do I.

Imagine you would tell someone about your complaints, what do you think is a pleasant reaction?

With new people it often comes up quite quickly, because it is such a big part of my life. If there is something in which my abdominal complaints are in the way, then I just say it. I have no problem with that, it is a part of me. And if people want to know more, they can always ask.

I find it very annoying when people feel too much pity for you or feel very sorry about it. I am always very direct myself. Everyone has something. Just handle it in a very down-to-earth way. I like it very much when people just say: “Oh, that’s stupid, if I can do something for you or have to keep something in mind, just say it.” But not too much pity, that makes me crazy. You just have to keep seeing me as a normal person.

Do you have any tips for people who need to have such a conversation at work or school?

I think that many people have symptoms that you do not see and that is often underestimated. I notice that I do that with myself as well. If you continue to underestimate yourself, others will. So it is also important to set limits for yourself. Watch out for downplaying your complaints, that’s important if you want to make your situation clear. Sometimes it is easier to write it down than to verbalize it, for me personally that works better.

Do you have any tips for employers or teachers during such a meeting?

I think employers and teachers are cautious about how seriously they take someone in it, because you always have posers. But if someone really comes to you with a certain problem, then you have to take them seriously. I think that the employer must specifically ask to what extent and in which areas you are bothered by this so that they can take this into account. What works, what does not work, when does that happen and how can we deal with it? Together you should look at how you can best arrange it for both parties. Because the person with the complaints, he does not always know how to convey his problems. During my internship I had difficulty entering the conversation, I did not want to lose my internship, but I did say how serious it was. Both parties must engage in the conversation, so that everyone can get the best out of the situation.

How can your family / friends take your complaints into account?

In the way they already do it: being there for me when I need it. For me, that often means distraction. I really enjoy playing games together, or watching a movie, but sometimes talking about my or someone else’s problems is also nice. And they keep in mind that I can cancel at the last minute, or go home earlier. They always find it a shame, but not stupid, and I like that.

Do you notice that you make better contact with people who also have these kinds of complaints?

I can sympathize very much with people who are suffering from something, and often they also sympathize with me. It is different for everyone, but everyone needs attention, someone who listens, and love. And a moment for himself. In this way you also know what another person may need. I just know what it is. I also have friends who have issues themselves and can cancel at the last minute. I recognize that very much myself. If someone sometimes just needs a day for themselves, I fully understand that. Sometimes it’s a shame if you have to cancel an appointment, especially if you do not see each other very often, but moving it to another time is not a problem at all.

How do you deal with your pain within a relationship?

I have noticed that some people can handle it better than others. In a previous relationship, I had someone who thought it was all very stupid. For example, she did not want to walk the dog if I was feeling bad. So the relationship was not good either. My last girlfriend was very caring. That was nice. When I was on the couch with a stomach ache, I did not even have to ask, she would walk the dog herself or make me a cup of tea. It was a natural process. I think you should have a conversation in a relationship with your partner. There are some things you should not say as a partner if the other person is in a lot of pain. You may feel some emotions like anger or frustration, but you should not show it, because that will make the other person feel worse. It does not help. You have to discuss things like that at a different time, when the person has little or no trouble. At that time you can discuss how you can best deal with it, and what you can do for the other person.

What would you advice the partner in such a situation?

At the right time, certainly discuss this with your partner. Explain how you feel when your partner feels bad, and that this is probably because you do not understand it. Because that is always the case, you do not know exactly how it feels. So really go into depth: what do you need? What should I do / do not do? Can you help me by doing or leaving certain things? Because if you are feeling bad, you do not know how you are acting and reacting yourself. I think it is very useful to put the issues together from both sides. For example: if you are in so much pain, then I will also feel down because we can not do something fun together. Can we come up with something that makes me feel less bad and that helps you also in feeling better? Make it negotiable, but do not be accusatory. And discuss it at a different time. I have learned this over the years, I did not really discuss it before. My girlfriend knew I had stomach pain, but I did not discuss it with her so that she could really understand it. That was not only my fault, but I also could have communicated better. I have learned a lot from this bad relationship. With my previous partner it really went much better.

Thank you for your time Jennifer! Do you have some last remarks?

I think it’s kind of like coming out, which might makes it easier for me. It is different from the norm, and being gay is that as well. I come out almost every day. Every time you meet people, there is something different about you. For me it is being gay, because that is not the norm, but also have abdominal pain, that is not the norm either. But it’s just how it is. I do not know if it has anything to do with it, but being gay is not an issue, and I do not think my stomach pain is an issue either.

Do you want to know more about how to deal with chronic pain? Read part 1 of the interview here.