Caring for someone with chronic illness

[KatAlina444]

I am hoping to get some advice on how to be present and caring for a friend with chronic illness, whilst navigating my own issues. My friend has been illness for many years now, in 2024 finally she was able to access treatment and has since been juggling doctors, blood tests, and whatever else comes along with it. I have been by her side, taken her to appointments and picked her up from hospitals, I've monitored her whenever she had to come off her medication for tests. Now, throughout all of this, I have also juggled quite difficult times; I have been diagnosed with ADHD and autism ( I am a woman in my 40ies), and I am currently in perimenopause, so I am dealing with a lot of very significant changes and it's been exhausting to say the least. On top of that, I have had to deal with a family DV situation, which came with lawyers and court attendances. My friend is feeling a better now, she tells me she has so much more energy than she used to have. At the same time, she relentlessly continues to talk about her journey navigating her illness, how she nearly died and made peace with death, she constantly brings up her medication regime. Which is fair - I understand chronic illness is lifelong and this is her reality. I also understand that this isn't about me, I am her friend and I listen to her when she talks, I validate her experience, and I have supported her as best I can throughout all of this. However, I am on the verge of burnout now. I find it really hard to keep listening to her telling me the same stories over and over, sharing social media posts about chronic illness - and I feel like a horrible person for feeling that way. Every single conversation we have includes something about her illness. When I try to tell her about my struggles, I do not feel supported at all, as the conversation inevitably goes back to her struggles. I hesitate talking to her about how I'm feeling about it - I tried recently to tell her that I needed some space to look after myself and the conversation immediatly turned to "why don't you want to spend time with me anymore, I feel like I never see you" .... I feel like my pain is not as valid as hers, and again - I feel horrible for even thinking this, but the fact remains that I have my own issues and I need to look after myself, too. How can I put healthy boundaries in place without coming across like I'm rude and do not care about her? 

[Eagle Ray]

Dear Guest_98435288,

I just wanted to say I hear you and I have felt similar in similar situations. I probably won't have a great answer for this as I'm somewhat like you and have found myself also struggling with friends where I have spent many hours/days... even years in some cases supporting them, while my own life issues have been absent from the conversation. If I have finally got to the point of bringing something up from my own experience, it is either ignored all together or briefly acknowledged before the other person continues to seek my support, tell me their life problems and expects me to keep being responsive. This would be ok if reciprocal, but it wasn't.

What I can say is that it is possible to get stronger with your personal boundaries and I have managed to do this, in the sense that self preservation kicked in and I knew I simply couldn't keep playing the same role over and over of absorbing the other person's stuff without being supported myself. This has led, in a couple of cases, to the friendship ending as my attempts to set boundaries wasn't respected. Like you, with one of my friends I said I needed space for a while. In this case, however, because it was getting so full on with her, I even set a specific timeframe and said I needed 2 weeks without contact because I was processing complex grief due to a recent loss at the time and I needed space to do that. I had gotten past the point of worrying about her thinking this might be rude at this point, especially as she had been calling me literally all hours of the night with her problems and expecting me to talk her down from them (which I had done multiple times by then and been so patient and supportive with her). Setting a time limit worked for the duration of 2 weeks, but at the 2 week mark exactly she started to relentlessly contact me again with multiple issues she wanted me to respond to and support her with. Eventually I had to say to her I just didn't want contact as it just kept going. She still persisted in multiple ways and I had to simply cease contact all together.

I think what I am trying to say here is that in this instance, what I learned was the person was not going to change even when I did explain my need for space. However, I think with some people you may have success in helping them to see your perspective if you explain it to them. The most important thing I think is to be both kind and honest, and this involves remembering to be kind to yourself as well as the other person. You kind of need to go into bat for yourself and see if the other person is able to genuinely be a responsive friend who will realise and recognise that you have needs to. If they have got into a an habitual pattern with you where you are always there for them, they may feel resentful at first. I realised I had inadvertently encouraged the pattern by always being the good listener, ultra patient etc. Obviously your friend has been through a lot, but so have you. Your needs matter and I think finding a way to express this may be helpful, even if it feels hard at first.

Perhaps you can make clear to her your situation - coming to terms with the ADHD and autism diagnoses, dealing with how perimenopause is impacting you and a DV situation which is pretty full on to deal with. You can directly state you are exhausted and you need time out to focus on these things in your life. This is in now way rude - it is truthful and needed self-care. How she responds will indicate the nature of the friendship and whether she respects your need for self-care or not. In a sense, how she responds to you is your answer about the friendship. Really, given her support of you, she should be stepping up a bit to give back some support, but if she becomes resentful or manipulative (e.g. tries to make you feel guilty), it may indicate it's hard to go on with the friendship. I guess at the end of the day, ask yourself, do I personally want to continue with the friendship and how do I feel about this person? Am I enjoying their company or is it always stressful for me? Do I feel we can both grow in the friendship and come out of it stronger and wiser?

[Eagle Ray]

P.S. I'm not sure I answered that particularly well. I think what I want to add is that when we shift energetically in our relationship with ourselves, that is we respect our own boundaries, others actually often start to do so as well. So I think often the key is changing our relationship with ourselves and others start to automatically sense we have needs rather than being solely focussed on how we can meet their needs. So how you feel inside about yourself can translate to how others on the outside treat you. This is a skill and awareness I am very slowly learning myself. It's a nuanced process and I'm definitely not all there yet, but I do feel a bit safer in the world as I'm learning to value and protect my own needs as well as being there for others. I hope maybe that helps a bit.

[indigo22]

Hi,

Welcome to the forums and thank you for reaching out to us.

I tried to write this post a few hours ago, but we are having some issues with the forums at the moment so have been tied up with reporting the issues.

Having been a carer, I can understand that you are feeling burnt out. It is not easy managing your own life at the same time as all that is involved in caring, it’s exhausting to say the least.

You have been such a good friend but now that your friend is feeling better, you absolutely do need to focus on yourself for a while in order to get back to a more normal state. I think you need to say to your friend something along these lines:

“Our friendship means a lot to me and I have been more than happy to support you through this crisis (or choose another word that fits) but now that you are feeling better, I need to focus on myself for a while as I am struggling with some issues that need my full attention at this point. I will keep in touch with you as often as I can manage, I just won’t be able to spend as much time with you as I have been. This is not a reflection of how I feel about you as a friend, this is just me needing to take care of myself right now.”

You are dealing with a different set of circumstances to your friend, but one is no more important than the other. If it is important to you, that’s all that matters, and if your friend is a true friend, they will understand that there are times, like now, when you need some support too. I can’t imagine you would know how to be rude, you just need to make it clear that, for right now, your own needs are the priority.

You have found yourself in this situation because you haven’t used boundaries, when you begin to set boundaries, it doesn’t always go down well with others but don’t apologise, you have every right to set them in order to take care of yourself and those who are not happy about it will get used to it eventually.

I hope this helps and please feel free to continue the conversation if you wish.

Take good care of yourself now,

indigo

[KatAlina444]

Thank you so much. You answered it perfectly..I feel seen and heard ❤️ I think the biggest thing causing me to burn out is the fact that I feel like I am not allowed to express my feelings around her, but reading your reply I know that I am way too hard on myself. 

Truly..thank you 

[Eagle Ray]

Hi KatAlina444,

Yes, that makes sense about feeing like you are not allowed to express feelings around her. I have had that tendency myself because I was not allowed to express feelings growing up as a child. I think we can worry about upsetting others or viewing their needs as more important. Your friend may even not have realised how much it’s taken out of you supporting her when you have had your own things to deal with. Just explaining that may help her to be more aware. Take good care of yourself and know you matter and it’s ok to say how you feel.

[therising]

Hi KatAlina444

I honestly think that sometimes it's not at all unreasonable to appear obviously upset or obviously stressed or obviously sad etc. Sometimes it's not until things become obvious to someone that alarm bells start to go off in their head. It can be understandable that a friend can become self focused for a number of reasons, including having to focus on their health and wellbeing. There also comes a time when that friend may need a bit of a wake up call in regard to us needing support and compassion for a change. We're allowed to vent, allowed to cry, allowed to openly show certain emotions and that's okay.

I think that sometimes when we appear a lot calmer on the outside or more together on the outside, people can assume we're calm and have it all together. In fact that may not be the case. While we can make our emotions more obvious, the right words can also help. Something like 'I feel like I'm falling apart in some ways and I need time to get it together. I really need that time on my own to collect my thoughts and find the way forward. An alternative can involve you helping me find the way forward. Either way, I'm desperate for a sense of direction and I need you to understand that while feeling for me'.