For those of us with acquired disabilities, the dynamics of our friendships and other relationships often change. As we adapt our life to our new reality, we sometimes lose people along the way because they’re unable to adapt to these changes with us. Friendships can very easily change with illness, with friends acting as caregivers being in a strange, new position of authority. A few of my friends do treat me differently now. They’ll over-offer help and assistance, want me to check in with them more regularly so that they know I’m safe and generally treat me as if I am now more fragile and less able than I was before. 

In some ways I am less able than I was before, but I am also much more able to ask for help when I need it, advocate for myself and my needs, and make sure I’m keeping myself safe and managing my health.  I don’t need to be ‘looked after’ in every moment, so it does get a bit annoying when people intervene without prompting and this can feel patronising. 

I know that my friends care and that their interventions are coming from a place of love, so I try not to let it irritate me too much. I do occasionally snap and remind people that I’m capable of looking after myself and asking for what I need when I need it, always being mindful that I don’t want to come across as the grumpy disabled person who can’t accept help.

When people become ill our friends are there for us, but with chronic illness people seem to slip away. Lots of disabled people that I know have lost a large proportion of friendships, due to the demands, issues, and longevity of their health conditions. People are more than capable of being empathetic, kind, and considerate for a while, but this can change once your health conditions extend into forever. I’m not sure exactly why, but this is what I think:

• It’s not much fun having the same conversation with a friend every time you see them: 

“How are you?” 

“Crap as usual.” 

“What have you been doing?” 

“Nothing really, some doctors’ appointments and more tests.” 

“What are your plans?” 

“I have none.”

I can’t plan anything because of my health. I’ve no idea how I’m going to be from one day to the next and this can make conversation difficult. I think that carers and friends could judge the situation on a day-to-day basis and take the pressure off the conversation when it’s needed. Sometimes just chatting about yourself or talking at me can help as I don’t feel as if I’ve got to think of something interesting to contribute to the conversation.

• Our lives are just on very different paths. At some stages of my illness, I know friends have been uncomfortable sharing their ‘wins’, whilst I seemed to be struggling to move forward, because of my health. I would always want to hear of good things happening to people. I’m thrilled for them and will celebrate their success as loudly as I ever have done in the past. Hearing of things going well for others can be difficult sometimes when your own life isn’t going so well, but it is much better to be able to deal with that personal disappointment, than to feel as if you're being left out of your friends’ lives, because they are trying not to upset you. So please don't feel as if you have to censor yourself.

• Unwell people have to cancel…quite often. If we make plans, we can’t always guarantee that we’re going to be able to make it. If we get a cold, didn’t sleep the night before or had something unexpected come up that used up all our energy, we’ll have to cancel on you. That’s ok a few times, but might become annoying after a while. Oh, and though I’m totally up for meeting up between 11 and 3, I’ll only be available 3 or 4 times a week and it’ll be totally dependent on what else I HAVE to do that week. Socialising can be low on my priority list.  Cooking a meal and having a shower take priority some days. Carers and friends visiting someone with chronic illness could be the only person that we’ll see that day. We might really want some personal interaction, but simply not be up to going out to get it. Having people come to us can make things much easier and will be greatly appreciated.

• Trying to understand how it feels to grieve for a life that you won’t be able to have is incredibly difficult.  Accepting disabilities and symptoms, adapting to limitations, and dealing with ableist structures and systems can be an awful experience.  I don’t think people can fully appreciate that, unless they’ve experienced it themselves. All you can do in this situation is to be there, be a shoulder to cry on, and listen without judgement or trying to fix things. This is just a part of our lives that we have to deal with.

Since I stopped working due to my declining health, my friendships have changed. I was missed off invites to events by one group of friends when I was at my worst, because they didn’t know if I’d be able to manage it. They didn’t want to make me feel bad if I couldn’t make it or assumed that I wouldn’t go. I’m not part of that friendship group anymore. They couldn’t get their heads around the fact that I’d know myself if I could manage it or not, and for me, it was worse to be left out, than to have that decision be made for me. 

Another group continued to invite me to everything they were doing and were totally fine when I said no. They asked where was best for me to go, adapted plans and let me say no without it becoming a big deal. These are the type of people that I want in my life. 

With my oldest friend, nothing changed. We’d still meet up every month or so for a catch-up and celebrate birthdays and Christmases. We discussed my changing needs and worked around them, sometimes not seeing each other for months, because we couldn’t figure out how to meet up (she has problems driving to places), but eventually we figured it out and our friendship didn’t suffer. She knows me so well and was there when I was a teenager and had a severe period of ME/CFS, and it didn’t change how she was with me then either. 

The new friends that I have ‘collected’ came from the care I receive for my health problems. I met 3 of my closest friends through the ‘Fatigue Clinic’ that I attended, and the pain course gave me another good friend. These are the people who just ‘get it’. We’ve been through the exercise classes, the pacing workshops and talked through our conditions in intimate detail. These are the ones that I don’t have to explain things to, who I can ask things like ‘have you tried this medication?’, ‘do you know that Doctor?’ and ‘what do you think about [insert alternative therapy here]…?’. This was great! 

Finding people who understood what was happening to me, who had similar conditions and were having similar experiences made so much difference to my wellbeing. I was lucky because lots of my existing friends (pre-fatigue clinic) also have invisible and chronic conditions, so I’ve always been able to discuss health issues with them and feel supported by people who understood what was happening to me, to some degree. But my new Fatigue and Pain friends were all in the same position as me. None of us could work, we were all female, single, childless, and youngish (26 - 54). It’s so much easier to have a cry about being disabled and single with someone else who’s in the same situation. Most of my existing friends have partners or are married and have kids, so lamenting not being a parent with them doesn’t come with the same level of empathy.

My health has been improving over the last two years and I’ve been able to see all of my friends more and support them more, as I’ve been able to focus on myself a bit less. Managing your health can be a full-time job: making doctor’s appointments, seeing consultants, getting referrals and tests done, applying for benefits, managing care, explaining yourself and your conditions to almost everyone you meet, and deciding what activities to prioritise while you're pacing yourself. Every aspect of life seems more difficult, more of a challenge and quite often a fight against some system or other, which takes a lot of energy, time, and mental and emotional capacity.

 

Understandably, I don’t think that I was a great friend for a few years (though I’ve been told that my friends would disagree), but I feel like I’m in a much better place now. I can catch up with friends, listen to them and give advice and practical support when it’s asked for. I can also balance this with time to myself and saying no when I don’t have the mental or physical capacity to manage things. 

This balance is something that I’ve struggled with for years. I need to protect myself, manage my health, but also be there for my friends. They are extremely important to me and a vital component of my life. My quality of life and mental health would be severely negatively affected without them, so I choose to put in the time and energy to maintain and strengthen the friendships that are important to me, and I am ruthless in moving on from people who have a negative impact on me, or simply don’t add joy to my life. 

So, if you’ve been wondering why someone you care for is withdrawn, or sometimes prioritises social activity over getting washed (or getting washed over making a phone call), maybe you can think of things from their perspective or, if you can, support them to make a plan to tackle all of the things on their ‘to-do’ list, including social time. Or simply be a friendly ear that they can rely on to be there and listen through the tough times, and then go and celebrate the good times!