Suffering from any chronic condition can be a lonely experience - COPD is no exception. There can be a number of reasons why people who suffer from COPD experience loneliness, feeling so breathless you can’t leave the house, long days sitting in A&E, on a bed, or in a doctor's surgery… the list is endless. However, one of the toughest aspects of loneliness that people often talk about stems from not having a group of people that understand what they are going through. From family and friends not believing there is such thing as COPD - ”is that a real condition?” | “Sounds like you just have a bad cough” - to others shrugging it off as an inconvenience - ”just take your inhaler”. No matter what their reason, it can be tough (like really tough). So, if you are looking to find someone who understands what you are going through, then you have come to the right place. So how does someone with COPD get around this common problem?
The answer: A support network.
Support networks do not have a fixed definition. They can come in many different shapes and sizes, carry out different functions for different people, and can be very active or very passive. However, they do all have one thing in common - they all include a person (or group of people) who you will feel comfortable with and trust. This can include your family members, friends, and even co-workers. The important thing is that whoever is in this network understands (or at least appreciates) what you are going through. Let’s see how important the support network is if you have COPD and how you can go about finding one to help you get through living with COPD.
Why is a COPD Support Group Important?
The mind and body are closely linked. There are many studies that show the link between having a healthy mind and the effect it can have on your body. Unfortunately, having a chronic condition is tough, and so it is extra important that people who have COPD are aware of the effect it has on their mental health. Like anything with your mental health, one of the most important factors to maintaining a healthy mind is to find someone to talk to, someone who understands you, and someone that you can trust.
Help can take many forms. But, a support network can be most effective [see its brightest day] by giving you the opportunity to share your journey or to learn from others who are going through something similar.
As already mentioned, simply having a condition can be a lonely experience. But, it can also drag you down and feel like you are running up a mountain. Finding someone to share your experience can help a lot. We know sharing is not easy, it requires you to be vulnerable, to open yourself to someone (often the most vulnerable part), and to be honest about how you feel - not just to the other person, but also to yourself. Yet, the benefits can be powerful as you start sharing your experience with a trusted group of listeners that can make what you are going through a little less sh*t. You can’t be sure it will alleviate all the difficulties you might be going through but there is always truth in the phrase “a problem shared, is a problem halved”.
💡 Remember, the aim of a support group member is not to completely understand what you are going through (if you find this great) - their role is to empathize with you and not judge you on your experience of living with the condition ❤️
Despite all the medical research out there, sometimes nothing comes close to the tips, tricks, and gems that someone living with a condition has learned over the years and that is often more than willing to share with another person going through something similar. Personal experience has a way of finding things that work, and things that don’t - so surrounding yourself with a group of people who have earned your trust and who have walked the walk might just help you uncover something that you might not have otherwise found.
💡 I feel compelled to remind you to be careful. There are a lot of people out there promising the world which ends up being nothing but snake oil. Exercise caution and consult your doctor - they have probably heard the question before 🧐
The above is not an exhaustive list of the benefits of a support network. Instead, they are meant to challenge you as to how you think about the other side of your condition - the mental side - which is often the side of the condition that a support network can help with the most. Now, the last question that has to be answered - how do you build one?
How to Find Support Groups & Forums Near Me?
Sometimes in life, you have to step out of your comfort zone - finding a support network is one of those times. You might find one attached to your doctor’s surgery, advertised on the billboard in your local shop or even a suggestion made via your pharmacist. But, for most people, you will have to search around to find one - and one that fits you. The good news, we have decided to compile the below guide below to help you find your support network - or what we like to call ‘Your Tribe’.
Find the Support Group
Some possible tribe members can be family and friends, condition support groups, online communities (e.g. Facebook COPD support groups), colleagues, and everything in-between. There is no one size fits all. But, there is a fit for everyone, some people might have to look harder than others. In order to increase the chance of finding the right fit we have one policy - do your research. This starts with thinking (and writing down) all the people you know who you might be able to invite into your tribe. If it is an existing tribe, make sure you try to dig deep into uncovering all the ones that are available to you.
Test the Support Group Tribe
The tribe will depend on how you test whether or not there is a fit for you and the members. Some tribes are easier to test than others, but we are just going to look at two categories in - ‘existing communities’ and ‘individuals’
With existing communities, many (most) have an open door policy. Those that manage them are aware that people join the community, but for whatever reason end up not feeling that there is a fit and soon drop out. This is perfectly okay - they know that to get the most out of the community, everyone needs to feel comfortable so they encourage you to be honest about your experience. The important thing is you go and give it a try.
💡 This can be a really tiring process (and in some cases) disheartening - it’s tough to join and soon realize you are not a fan and feel like you are back at square one. To help with this, it can help to do some research in advance of joining. This can be anything from finding someone in the group before you join and talking to them about their experience (even better if you can talk to a few) or if it is online, try looking up some of the virtual events, content, or session information they have previously made public. This will hopefully filter out the groups that are not a good fit for you.
This is a slightly harder route the joining an existing community but it can be extremely rewarding - you know the people in it are all routing for one person… “you”. There are a few things that you might want to be aware of when approaching someone to join your tribe. Firstly, think about the relationship you have with them. If you feel close to them, be honest. Tell them you are looking to build up a support network of people who understand what you are going through. If you are not, be vulnerable. Mention something to them about your condition and see how they react. If they listen and give support, keep testing - you might have found a winner.
Join the Support Group
Finally, when you are happy with the tribe you have joined, or built, congratulate yourself. This is a big achievement - you have both put yourself first (which many people struggle to do) and you have put yourself in the uncomfortable position of asking for help. Now the most important part - always ask for their help if you need it. It’s your tribe, so own it.
💡 If you have searched high and low and have yet to find a support network that you like, we would love to hear from you and hopefully, we can put you in the direct direction or make a few suggestions for you.
Tribe members may come and go. That is completely okay. The important thing is that you realize when you don’t feel supported. Then it is time to find a new tribe. You did it once, you can do it again!