We may not be able to cure chronic illnesses but through peer to peer support we can ease the pain of isolation.
The positive effects of chronic illness support groups such as Frimley IDB Group.
Many sufferers struggle with their diagnosis or continued suffering of their illnesses. It can be mentally exhausting to suffer on a regular basis for a prolonged period of time. Not knowing if and when it will end can be frightening. In spite of that, the strength shown throughout the chronic illness community is so strong and inspiring that it shows how some things will never knock people down. There are so many people showing how you can take positive from a distressing situation when there is no escape.
You need somewhere that lies between the doctor’s room and your friendship circle. Somewhere where you can speak about technical information where people understand the language you need to speak in, as well as having the emotional support that isn’t so impersonal as your consultant has to be. An informal environment where you can speak how you can feel without being judged.
There are many support groups with people who are going on a similar journey that are connecting around the world. They vary from digital environments to physical meet up groups. Whatever form the group comes in, it is clear that sometimes the best help comes from those who understand and can relate to what you are going through.
In the following article, I will be looking at what chronic illness is and how many who live with this struggle to talk about what they are going through. This can cause a real sense of isolation which I will also be discussing. My own personal story is one that is similar to many that suffer from IBD or any other chronic illness. I found comfort in a local support group, Frimley IBD Group. I will also review how hearing information from professionals during these groups can have a positive effect. As well as how my support group promotes the meetups.
What is chronic illness?
With a chronic illness, there is no seeing the light at the end of the tunnel. A chronic illness is a condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. Examples of chronic illnesses are Arthritis, Diabeties, Dementia, or HIV/AIDS.
I personally suffer from a chronic illness, IBD (Inflammatory Bowel Disease), which is very common. It’s a disease that is difficult to talk about due to its taboo nature; bowels. As Britons, we are quite polite in keeping our bowel habits to one’s self. This, in turn, makes this disease that affects 1 in 10 so difficult to diagnose, because nobody likes to talk about it. With many patients suffering from the symptoms of the disease for a prolonged period of time without treatment, leaving many patients in critical condition once the diagnosis has taken place.
Let us forget the diagnosis. As a patient of IBD, you face quite harsh physical effects on your body. Some effects include frequent need to go to the toilet, malnutrition, extreme blood loss in your stool (causing anaemia), fatigue, extreme weight loss, strictures, inability to eat solid food, extreme pain, cramps and swelling of the tummy. Treatment includes harsh drugs such as steroids, biologics (Humira), and chemotherapy drugs (Mecaptapurin). This all involves hospital visits, stays, and in 1 in 4 cases, surgery.
With this being such a taboo illness, most patients decide they do not want to share this part of their life with the world. This is common among most of the chronic illnesses. Whether it is a sense of shame, unwillingness to open up to those who do not understand, or fear of being judged, many people prefer to keep their illness quiet. They cannot discuss something that takes up a large portion of who they are with their colleagues, friends, and in some cases even their family.
Keeping what you are going through inside, not being able to talk about how you feel to those around you, can eat you up. It is a real form of isolation.
Putting your feelings into words is healthy. Allowing yourself to open up to someone can feel liberating to not only say how you are feeling out loud and make your thoughts real but to be heard by someone and for them to listen to you. Your feelings are valid and real and must always be considered. It is a key component when looking after your overall wellbeing. Your mental health should be treated equally to your physical health, as it is just as important.
Counselling services have such a positive effect because all of us need to be heard and it allows us to have a safe space to do that without judgement. It should not be shown as a sign of weakness to share your feelings or need this service. It should be as normal as visiting the dentist, only instead of servicing your teeth before you have a filling, you are checking in on your mental health before you become depressed.
Saying that though, this formal environment does not suit everyone. This is why support groups are a great option for people who do not feel comfortable talking to those close around them or if they do not feel like they are being heard. It allows them to relax with normal people like themselves, that happen to be going through or have gone through what you have. Feeling comfortable with someone and letting conversations naturally digress can be the best way to do this.
I was first diagnosed in December 2018, I was 19 and was at university at the time. My friends were out at house parties and clubbing. I was starting a journey that took 7 hospital stays, 15 different drug combos, 6 rounds of steroids, and the magical drug Infliximab to finally get me into remission, over a year after diagnosis.
I couldn’t tell my friends what I was going through. I was embarrassed to talk to my family about my symptoms. Being embarrassed about what I was going through led to me being diagnosed almost 6 months after I began getting sick. This was a difficult process, as not only did I want to share what I was going through, even with my doctors, because people do not talk about the illness enough, many GP’s are unaware of what the illness even is so they could not find a cause for my symptoms. It was not until I got so sick that I had to be hospitalised to replace fluids and iron from heavy blood loss and inability to eat or even drink water. At which point gastroenterologists explained to me what the disease was and that there was a strong chance that I had it.
This is a story that is not dissimilar to others with the disease.
A few months after my diagnosis I was invited to a support group that allowed me to find comfort that I wasn’t alone.
This was a network of people suffering from the same disease in my local area. We shared the same hospital and team of nurses and doctors as there are not many in the field. I heard stories about interactions with doctors that I had recently been assigned. On hospital wards that I had previously stayed in. Jokes about situations that I can relate too, that are too embarrassing for me to tell anyone else.
This was a unique feeling that I had never experienced. A community of people that come from so many different backgrounds, that come together to discuss and relate about a part of their life that is not seen to the rest of the world. But at this moment they can be themselves and share openly how they are feeling and everyone around them can understand, in this space of no judgment.
Knowing that you are not going to be judged relieves the pressure and burden of keeping everything in. A freeing experience that is quite simply meeting friends to have a conversation about everything and anything. This does not always have to be about your illness or your life that revolves around your illness. It can be about day to day life, work, relationships. Knowing that everyone has their own individual stories and backgrounds, yet we can all connect with this one thing.
Frimley support group.
Frimley Health NHS Foundation Trust’s Inflammatory Bowel Disease (IBD) Patient Group was formed in 2017 to help patients in the local area support one another in a more relaxed environment. It was formed by a former IBD nurse from Frimley Park Hospital that could see the lack of community surrounding the patients that she saw on a daily basis.
The friendly group is run by patients for patients with organised meetings arranged throughout the year supported by the Frimley Park Hospital IBD team.
As well as providing an environment for people to mingle and exchange their stories, the meetings also include an opportunity to question a wide range of guest speakers who are booked in to offer their insights on managing IBD.
Meetings are currently held at Farnborough Rugby Club where there is free parking, and refreshments can be bought at the bar. Relatives, carers and children are always welcome.
Talks from professions.
Finding information can be difficult if you are stressed and do not know who to ask. With consultant appointments being scheduled months apart and lack of information of diseases such as these means fewer people to talk to to find answers, you are often stuck with burning questions. This usually results in contacting your hospital, wasting the NHS’s precious time, or searching the internet.
The latter is one most of us result in doing and it never ends well. With an ocean of information, waves of different answers hit you and this can be overwhelming, even without having received a reliable answer.
Asking peers who have gone through what you have may give you the answer to questions, as they may have received a reliable answer once before. However, everyone is different and what works for one person may not work for another. This must always be remembered when visiting groups such as these. Suggestions should be welcomed positively but do not rely on it as one shoe fits all, because it doesn’t, and never forcefully impose advice.
For example, a large debate was once had over spicy food and whether it actually made the illness worse or helped reduce symptoms. We had members that were adamant that any form of spice caused a flare instantly, whereas some had Tumeric curries on their bad days to settle a flare. Resulting in the conclusion to agree to disagree!
Of course, you should contact a medical professional for serious concerns and worries. The most reliable advice will be from your consultants and nurses.
Frimley IBD Group is one of many who invite speakers to their meetings to discuss topics that are professionals in the field that relates to the group. By designing meetings around a topic helps the group know what they have in store for that meeting, even encouraging patients to attend as they want to find out more about a subject, especially from someone that knows what they are talking about. Hearing information about something that directly relates to you or affects that you may not have known before can be very comforting. Understanding what you are going through is normal, finding answers to burning questions, or even hearing facts that you already know but need reminding of. Information can be very powerful.
These talks not only allow professionals to share information about a subject but allows the group to ask questions and have a conversation about the topic. These conversations can usually be missed during doctors appointments and consultations due to the short time you have to ask questions. Having an environment where you can stop and interject with points that will not only help you but those around you who also want to know the answer to the question you are asking. A positive space to discuss such a large part of your life that there really isn’t an opportunity for anywhere else. You are left to talk to your peers. Giving people the opportunity to openly discuss the subject, which they may not have anywhere else.
Spreading the word.
We continuously try to spread the word of our group to make people in our local area feel that they are not alone. Allowing people that there are many people that are going through the same journey just down the road from them.
To do this, patients are told about the group at hospital appointments. There are flyers and posters in the outpatient’s centre, inpatient gastrology wards and in infusion units where the patients receive their medication and treatments. Even letters that get sent out in the post include a flyer. Emails that are sent to patients have a notification about the next meeting in the footer.
Our members pull all the strings they can to promote the group to friends, family and their friends and family. With it being such a common but untalked about the disease so many people have it that you do not know. So we continue to promote this group to make them realise it isn’t just them. One of our members working at the local newspaper was able to put in a word to get our September 2019 meeting in the local News & Mail, covering the evening’s events in its community news section.
The newspaper is sold in the Aldershot, Farnborough, Camberley, Fleet and Yateley areas, so the article would have hopefully had been read by other Frimley Park Hospital IBD patients or their families – especially those who did not attend that month’s meeting or who may not even know about our group yet. Hoping the coverage will help to spread the word further.
‘Quiz, chocolates and support. Biologics was the name of the game when Frimley Park Hospital’s Inflammatory Bowel Disease (IBD) patient group met on Tuesday, September 10 at Farnborough Rugby Club, in Tile barn Close.
The hospital is IBD biologics nurse specialist Jane the food was the guest speaker and began the evening with a quiz. The answers to the questions helped group members learn about the drugs, how they work with IBD, the possible side effects, costs (ranging from a few hundred pounds a year to 20,000 a year), and how the hospital monitors their effects.
A box of chocolates was kindly donated by Jayne as a prize for the winners which, in a truly democratic fashion, was passed around for all to share.
More than two dozen people attended the meeting and group chairman Jane Freebairn said: “Many were there for the first time and, although a bit nervous about what they were letting themselves in for, they soon realised we were very welcoming and friendly.”
“After Jayne’s talk, we had ample opportunity to mingle and chat and share our experiences – all done with our usual sense of humour and sympathetic understanding. It’s good to know you are not on your own.”
Quote from a Frimley IBD patient and member.
“How did you feel when you were diagnosed with IBD?
For me, strangely, it was a sense of pure relief. It was 10 years ago. I was in my mid-30s and had been suffering bowel problems for months; struggling to eat, losing a lot of weight, enduring painful episodes of bloating and extreme stomach cramps and, of course, passing loose and, at times, bloody stools. Then there was the constant fatigue, affecting both my professional and social life. On the increasingly rare occasions I did meet up with friends or family the change in my appearance and once lively demeanour was immediately picked up on – nothing was ever said but I could sense it and read people’s faces. We were all thinking the same thing without actually talking about it; after living an extremely unhealthy lifestyle for close to two decades I had bowel cancer, it had to be.
The problem was my condition was taking so long to diagnose there wasn’t much I could tell people even if they did ask – I could have gone over the range of symptoms with them ad nauseam but who wants to do that when actually in denial? Most, if not all IBD sufferers have been through the full spectrum of medical tests – a seemingly never-ending trauma of internal probes failing to get closer to finding once and for all the cause of so much discomfort, embarrassment and pain. The medical strategy at the time for me was to rule out all the other possibilities before settling on a definite conclusion.
In the end, I didn’t have cancer, the cause of my problems was Crohn’s Disease – bad enough but, nevertheless, a C-word with fewer fatal connotations attached to it, hence my immense relief. Being diagnosed lifted such a huge weight from my shoulders. Finally, I could be prescribed medication that would build up my defences against the biological attack taking place within me; I could plan a diet that would stabilise my rapid weight loss and would be under the observation of specialists in their field.
In short, Crohn’s could be managed and I could start rebuilding my life.
Knowing what you are dealing with and having a plan of treatment reduces anxiety, in itself a possible trigger for IBD, and provides a focus for attention. Having a clear diagnosis also helped me to mature and talk to people. I had never heard of Crohn’s before my diagnosis but I now had a hook on which to hang my symptoms. It was only after being diagnosed that I admitted to others, and they to me, our previous grave concerns.
Of course, being diagnosed is just one step along the journey of living with IBD. It doesn’t go away just because you know what it is and it can sometimes remind you of its presence when you least expect it to. There would be more dark days ahead for me but I now had an understanding support network among family and friends that helped me through the most desperate of times.
Sharing our stories can have a positive effect as part of a holistic approach to healthcare. Knowing you are not alone and that there are others in a similar situation, who have been through the same experiences and have come out the other side, can aid our own recoveries – both physical and mental.
It’s good to talk, and that is why the fledgeling Frimley Park Hospital IBD patient group is so important. It is a resource that costs nothing to attend or to contribute to on this website, but the rewards from being part of a growing community and support network of IBD patients has the potential to be priceless.”
Looking at support groups as a whole and what they can offer, we can see that they can have a genuinely positive effect on patients suffering from a chronic illness in many ways. They help reduce the isolating effect not talking can have on you by being able to confide in people just like yourself. Being able to discuss your illness informally with people who understand. Sometimes even having the opportunity to hear from professionals in a more relaxed environment. Frimley IBD Group has been a great example of this. There are so many just like this one across the country and world.
In my opinion, I believe it is a great experience for anyone struggling with an illness and the social impact it may have on them. I would recommend looking at the local groups in your area by asking your doctors, looking online or social media to see if there are any meetups, or failing that, why not start your own patient-led support group and meet up with fellow patients you may meet at the doctors, hospital, or through social media.
I have shared my personal experience, and although I do not expect everyone to feel that support groups work for them, why not give it a go if you haven’t already to see if it helps you.