Supporting others and helping them cope

Take time to better understand the health issues and experiences the person is describing by reading any links or resources they may have sent you, or by seeking our verified sources of information such as specialist charities or the NHS.

Another source of valuable learning, especially about people’s lived experiences and services available locally, can be support groups and social media, so do take the time to look into those. If you think the person might want your help in raising a concern or making a complaint about a healthcare encounter, you could also familiarise yourself with organisations like Llais, so that you are able to signpost them appropriately.

“It was a battle explaining my needs to my employer, who was very distrusting of a condition they had never heard of…They didn’t grasp the gravity of how it affects my physical ability and health.”

You might want to ask questions so that you fully understand what the person is telling you. Asking questions can show that you are interested and want to know more, which many of those living with chronic and non-visible health issues appreciate. Asking questions is fine but be gentle – it shouldn’t be an interrogation.

Ask the person about the things with which they are struggling and if there are particular ways in which you can help. If the person is resistant to answering questions, take your lead from them and don’t push for answers. You can always try again another time, ask them differently, or show your support in other ways.

Many of those living with chronic and non-visible health issues don’t want sympathy or pity, they just need you to show that you’re trying to understand and appreciate the magnitude of how those issues affect them as individuals.

You can find out more about empathy and how to develop these skills on the Endometriosis Cymru website. Whilst the website is focused on endometriosis, the information and ‘Me and You Empathy Quiz’ can be used by people living with any health condition and those around them: https://endometriosis.cymru/living-with/family-and-friends/building-empathy/

“Where I have had good conversations, it’s where the other person wanted to understand and know more. I don’t want sympathy or pity. When I say ‘I’m in pain’, I want for them to have half a clue as to what I’m on about.”

You might know several people with the same or similar health conditions – but this doesn’t mean that they’re all affected in the same way or to the same degree. Symptoms can vary from one person to another, so it’s important to listen and learn how to help that person with their specific issues. It’s important not to make assumptions as they won’t always be correct.

It’s also important not to be dismissive of a person’s experiences. Our members say that one of the most difficult things they have to deal with is being told about someone else who is coping fine with their diagnosis, when they might not be living with the same issues or circumstances. It’s vital to appreciate the individual’s expertise and knowledge about their own body and life, including their limits and support needs.

It is important to try to be open-minded and learn from what the person in front of you is saying. ‘Gaslighting’ is a term often used by those living with chronic and non-visible health conditions, which is where their experiences are undermined or disbelieved. It is vital to avoid doing this, as it can have a serious impact on the individual’s wellbeing.

“My GP being dismissive of me trying to describe my painful periods led to me not asking for help with that pain again for several years. I was made to feel like I was making a fuss about something that was normal. I now know that was not the case. I get anxious at the doctors, and it shows as tears. Some doctors and nurses then focus on the anxiety as an issue rather than the reason I’m actually there.”

“The fear of striking the right balance between telling people how things actually are realistically versus not sounding dramatic or pitiful. It’s especially difficult when trying to describe chronic migraines or chronic fatigue syndrome as people naturally want to relate and show they sympathise by telling you they understand as they too get bad headaches or are tired after work. It can be frustrating and then you feel guilty for feeling frustrated with them.”

Many of those living with long-term health conditions describe fatigue as being one of their most debilitating symptoms but that levels of fatigue can vary daily, depending on how much mental or physical activity they’ve undertaken. It’s important to understand that the rest periods people need to help manage fatigue isn’t being ‘lazy’ but a tool to help people manage their symptoms and reduce their impact.

Another common symptom of chronic illness that can change from day to day is pain, which can fluctuate depending on lots of factors, such as activity levels, hormones. or medications. Because pain is often not visible to others and can be hard to describe, many say that they feel like it’s something they have to ‘hide’. Our members ask people to understand that if they say they’re hurting it’s very important to be believed and, if appropriate, remind them of their pain management techniques.

Finally, people with non-visible health conditions ask others to remember that whilst they might look ‘well’ on the outside, that doesn’t mean that they are, and that chronic health issues can impact all aspects of their lives, including relationships, finances, and psychological wellbeing too. It’s important that these wider implications are understood and not under-estimated.

Maintaining contact with a person living with chronic illness is greatly appreciated. Lots of our members describe feeling increasingly isolated, often because they’re not able to join in as much with social activities due to fatigue, pain, or spaces not being accessible.

Keeping in contact, even if just the occasional phone-call or message via social media can let people know that you care and are genuinely interested in their health and wellbeing. Offering to meet for a coffee and a chat is also welcomed, even if the person isn’t able to get out and about. It’s important not to get annoyed if they’re having a bad day, especially if they have to cancel plans – remember, it’s probably more upsetting for them than you, so don’t let it put you off keeping in touch!

People may have lived with their chronic health condition for a long time, so they’ve done their research and tried out lots of different techniques to help them manage it. It’s important that you understand this and don’t make offering advice the main topic of your conversation unless you’ve asked the person first and that’s what they want to hear. It may be that they actually just want the opportunity to vent or have a laugh, so do take your lead from them, including being alert to cries for help.

Sometimes, rather than offering advice about what the person can do for themselves, it may be that providing practical support is the best option. It might be that they want your help with doing some shopping or attending an appointment: if doable, these things can demonstrate just how much you care and can be more meaningful than unsolicited advice. If you’re tempted to offer this, don’t take it personally if the person rejects it, as they’ve likely heard it many times before!

Many of our members tell us that they’ve sadly lost friendships and relationships over the years because people don’t always have the patience to cope with the person’s chronic or fluctuating health issues. They describe friends and family members getting frustrated when there isn’t an effective treatment or cure, and not understanding why the person isn’t able to do the activities they did before the onset of their condition.

It’s also important to be aware that there can be long waiting lists for NHS services and that, sometimes, patients can experience long diagnostic delays before their symptoms are attributed to a cause. This means that treatment and care aren’t always immediately accessible. For some conditions, there isn’t a cure, and patients have to find ways to manage their own health. With all of this in mind, it isn’t necessarily helpful to keep asking the person affected if they’re ‘better yet’. Instead, you may have to accept that the person will need support and your patience for a long time.

FTWW is a disabled people’s organisation focused on female health equality. As you can imagine therefore, many of our members will have lived experience of ableism and gender prejudice. You can read more about this on both our ‘About Us’ and ‘Disability’ pages.

It’s helpful to be aware of the social model of disability so that you can be a better ally to those living with chronic health conditions and not add to the barriers and negative attitudes many have encountered. It’s important to not make disabled people feel like a burden.

In terms of gender prejudices, it’s very easy to buy into historical misconceptions about women being ‘hysterical’ or weak. But actually, these are inaccurate stereotypes which aren’t helpful and can actually result in health conditions going undiagnosed and worsening prognosis. It’s important to be aware that many health conditions affect women differently to men and that, often, diagnostic tools and treatments haven’t considered women’s bodies or needs so this can mean medicines and services might not work as well for them. Be respectful, listen, and be willing to work with the person in front of you to establish the best ways forward.

There are lots of ways to be supportive of a person in your life who is living with a chronic health condition, ranging from being a listening ear, reading about their health issues, and just being a kind, patient presence in that person’s life. If you have the means, you can also show support in practical ways, such as offering to attend appointments with the person, helping them explain the impact symptoms are having on them, or making notes for them if this is something they need you to do.

I find a lot of the public are unaware but as soon as I tell friends they do try to find out more. I have relatives who also had (my condition) so they know what I’m going through, and they give me tips that helped them.

If you’re the person’s educator or employer, you can show support by working with them to identify reasonable adjustments that would help them in the classroom or workplace. You can find more information about what this might entail on our disability pages.

If the person is living with a menstrual or gynaecological health condition, the Endometriosis Cymru website also provides useful insights about the types of practical support that might be helpful in educational or employment settings.

Public Health Wales’s ‘Hapus’ website also has a section on how people and professionals can help to protect and improve the mental wellbeing of those around them which you might find useful.