armchair: often applied to persons who are addicted to home-made views of matters in which they have no first-hand knowledge The Oxford English Dictionary

I have met many people who have no real knowledge of IBD or the accompanying treatments, but who nonetheless feel qualified to offer (unsolicited) advice on my disease, medication, diet and lifestyle.

Most of these people are simply misinformed, and do not understand how their ‘well-meant’ comments are often very unsettling and upsetting. Here are my thoughts on how to identify and tame a wild armchair expert.

The armchair expert’s natural environment

Of course you can be unfortunate enough to come face to face with an armchair expert any place, any time. But there are some factors which make the unwary IBDer particularly susceptible.

• IBD is a chronic condition – there is no cure (nor a conclusive explanation for its cause).

• IBD manifests differently in each individual. IBDers may have greatly varying experiences in terms of severity, symptoms, treatment and responses to treatment. Even within the course of your own disease there will be things you do at one time that you cannot do at another.

• IBD symptoms primarily involve the bowel and bodily excretions which are taboo topics in ‘polite’ society. As a result there is a lack of general knowledge about the disease, and many people do not appreciate how serious it can be for patients.
  

  This lack of understanding is sometimes exacerbated by confusion about IBD (Irritable Bowel Disease) versus IBS (Irritable Bowel Syndrome).

  Irritable bowel syndrome is characterized by abdominal pain or cramping and changes in bowel function — including bloating, gas, diarrhea and constipation. Fortunately, unlike IBD (ulcerative colitis and Crohn’s disease), irritable bowel syndrome doesn’t cause inflammation or changes in bowel tissue or increase your risk of colorectal cancer. In many cases, you can control irritable bowel syndrome by managing your diet, lifestyle and stress.

The armchair expert thrives in this environment of uncertainty, ignorance and misinformation.

“I read an article which said Crohn’s is caused by wheat – should you be eating that sandwich?”

“My friend thought he had colitis but it turns out it was just stress – maybe you need to relax more?”

“My nephew doesn’t have dietary restrictions – why do you?”

“I think you probably just sleep too much / don’t sleep enough / exercise too much / don’t exercise enough .”

Beware: the dangers of the wild armchair expert

So, someone who doesn’t know any better makes a few unhelpful comments – what’s new? Why are IBD armchair experts so annoying, and sometimes dangerous?

The very fact that IBD is surrounded by uncertainty, ignorance and misinformation means that IBDers may be unduly influenced by such comments – and may easily lose confidence in their own knowledge, experience and the choices they have made about their health.

• It often takes years for a patient to become familiar with the nature of their own disease and comfortable with a chosen course of treatment.
• Even a ‘seasoned’ IBDer can experience a sudden change in their symptoms which throws them back into a ‘novice’ phase of learning.
• Patients with chronic diseases such as IBD are often desperate for any sort of answer or hope for the future and may fruitlessly pursue ‘miracle cures’ (whether developed by opportunists looking for fast money or by people who genuinely believe in benefits of their own product).

Often, we still have many questions about our own disease and treatment, which we discuss with other IBDers (evidenced on active online forums), our doctors, family and friends. And, at times, we feel helpless and hopeless.
But we are never helpless nor hopeless as long as we are making positive decisions about our health and moving forwards, looking to the future. We should be confident enough not to be undermined by careless comments, and should also be able to recognise when we are being offered new information which might be useful. So how do I respond to armchair experts?

Taming a wild armchair expert

Isahrai captures an instinctive response to the armchair expert beautifully:

My closest friends have never given me unsolicited advice on how I should treat my cancer… They trust my decisions and they trust that I will ask for help or advice when I need it. They trust that I must be doing something right because I have been officially “terminally ill” since 2001 and I’m still here…

Now, the question is, that I pose to these dear, wonderful people… how can I convince strangers and acquaintances to shut the f*#% up and … how can I justify punching a woman in the face … when she asks “How dare you waste your life?” because I am drinking a glass of wine when she feels I should be eating nuts and berries and kum-bay-yahing my way to perfect health?

Of course, there are many (most) circumstances when punching someone in the face is not an option. I have become very angered by the thoughtless comments people have made and wished I could respond with something cutting and demeaning (often formulated some time later when I sit alone and still seething).

However, I doubt that this will have much productive effect on the armchair expert and it certainly does little to make me feel better. It is worthwhile remembering Hanlon’s razor, an adage which reads:

Never attribute to malice that which can be adequately explained by stupidity.

And so I have been tempted to stay silent and simply leave the conversation as soon possible. However, even assuming stupidity is the source of the comment (rather than outright malice) silently suffering the ignorance is as fruitless (and more frustrating) than responding in anger.

I have found that the best approach is a balance of honesty and accuracy, varied according to your level of comfort and the particular circumstance (no more, no less), delivered politely but firmly.

Offering more details than are necessary may encourage the armchair expert to embroil you in a long unwanted conversation on the topic. Being deliberately vague will lead the armchair expert to believe that you are truly ‘in the dark’ and require even more of their sound advice. And remember, you are not obliged to provide any detailed information (or discuss anything at all) if you do not wish to.

In the field with armchair experts

Here are a selection of the types of comments you might hear from an armchair expert – and possible responses:

“I read an article which said Crohn’s is caused by wheat – should you be eating that sandwich?”

Actually there are many theories about what causes Crohn’s and none have been conclusively proven. It has been concluded that the disease is not caused by wheat but there is often confusion because people may choose to exclude wheat from their diet for other reasons.

“My friend thought he had colitis but it turns out it was just stress – maybe you need to relax more?”

It can be difficult to accurately diagnose digestive diseases as there are many illnesses which share similar symptoms. However, IBD is very different from stress-related problems such as stomach ulcers and IBS.

“My nephew doesn’t have dietary restrictions – why do you?”

The symptoms and severity of IBD can be very different for different people. In terms of diet, each patient is encouraged to determine what works for them and I have found through experience that —– does not agree with me.

“I think you probably just sleep too much / don’t sleep enough / exercise too much / don’t exercise enough .”

Thank you for your concern, but that’s not an issue.

You can see this last response is a little short, intended to let the armchair expert know that this is not something you wish to discuss.

Of course if someone has seen a news item or read an article that they sincerely believe will assist you, there is no harm in inviting them to send you a copy when they have a moment. This will often sort those who wish to be genuinely helpful from those who simply wish to appear to be helpful.

Incidentally, I have also found the honest and accurate approach, without providing too many details, a good approach for explaining IBD to a new friend or acquaintance. Then let them decide how much more they want to know.

So, how do you deal with armchair experts?

And yet many IBDers (and other people with chronic illnesses) do not join a support group or online forum. They may register with an Association, having been given the forms by their doctor, but they do not join and engage with the community. Last week I gave you the first 3 reasons not to join a support group (and why you should join anyway).

Here are the final 4 reasons…

Reason 4: I have only a mild case of IBD – the other people at the support group (or on the online forum) will probably be more sick than me and have a real reason to be there.

To begin, the assessment of the ‘mildness’ of your disease is very subjective. And the disease activity at any particular time is no indication of the future course of the disease. James Lang in Learning Sickness says that:

my initial inability to come to terms with my disease, and accept its presence in my life, was seriously exacerbated by … [the doctor's] estimation that my condition would remain a mild one…

In fact, Lang became very ill, and it was this serious flare which lead him to a deeper understanding of his disease.

You are not in competition with the other people at the support group, and they are not there to judge you. Your experience with the disease may be limited, you may be newly diagnosed, but go and learn from others and share your own experience – the people you meet will appreciate your honesty.

Reason 5: I am embarrassed by my illness. I don’t want to think about it too much or have to tell people that I am going to a support group.

Yes it is bowel disease and its vocabulary includes words like colon, rectum, faeces etc. These are words not usually spoken in ‘polite’ company. But this is the reality of your disease and you have no reason to be embarrassed. You set the tone for how people respond to you – not the other way around. Have a brief description of IBD ready, using the words you are comfortable with, so you can respond in a relaxed manner when people ask about your health. Inject some lightheartedness if you want to. Just because you are being honest doesn’t mean you have to be graphic – if in doubt err on the side of brevity.

Go to a support group, check out an online forum, you will find plenty of people with stories which are much more *embarrassing* than yours!

Reason 6: I am a strong person and can handle my own problems. I don’t need a support group.

You certainly are a strong person and can handle your own problems. You’ll probably make some mistakes along the way, we all do. But you don’t need a support group to give you the answers – they won’t have all the answers anyway, no-one does.

But why not cut yourself some slack – be as generous with yourself as you would be with others. If you discovered that a friend had a chronic illness and was going through some difficult times, would you think ‘well they are a strong person I am sure they’ll be fine on their own’? Or would you think ‘They could do with some time out – I might give them a call and invite them to lunch’? You might not need the support group but maybe the support group needs you!

Reason 7: I have a good support network of friends and family – I don’t need to speak to strangers.

It’s great to have supportive friends and family but at some time or another, perhaps when you are feeling sick, or low, or when you have an uncomfortable procedure, or take your third round of pills for the day, you will feel alone in your experience. This is when it is good to know others who are having (or have had) similar experiences. This doesn’t mean your loved ones should feel excluded – perhaps your partner would like to attend a meeting with you so that they can better understand what you are going through. Or perhaps your family would like to hear about the latest news from your online IBD forum.

So what’s the bottom line?

• Join an association

Australian Crohn’s and Colitis Association (ACCA)
Australian Crohn’s and Colitis Association Qld (ACCAQ)
Crohn’s and Colitis Foundation of America (CCFA)
Crohn’s and Colitis Foundation of Canada (CCFC)
National Association for Colitis and Crohn’s Disease UK (NACC)

• Go to meet-ups in your area

Find meet-ups through your local association or websites like Meetup

• Join online communities

Try Healingwell.com and Crohn’s and UC Support Group Australia

• Commit to engaging with the community

Of course, as IBDers, we often have more excuses to stay at home than others might: we’re tired, nauseous, in pain, fatigued, running to the loo every 10 minutes. But make the effort to go to that first meet-up, and make a commitment to keep going as often as suits you, and you might be surprised by the outcome.

Online forums require a similar commitment. When you first join an online community you may feel ‘out of the loop’. But keep checking in, following conversations, and offer your thoughts when you are ready. As long as you respect the opinions of others in the group, you can’t go wrong. You will usually find that the forum regulars are quick to welcome a new poster – but don’t be offended if you don’t get a lot of responses in the beginning, it’s not personal, it’s just that there is usually a lot of new messages at any one time!

We now have support groups (locally or online) to help us through any number of life’s challenges. This is particularly true for those with chronic or acute health problems. One of the major functions of IBD Associations around the world is to provide support through local groups or member networks. There are also more informal online communities of patients.

The purpose of these groups is usually one or more of the following:

• offer understanding and emotional support to patients and their families/loved ones
• provide access to the latest medical information
• share personal knowledge and experience
• use the power of the group to advocate for greater funding, research, care or awareness

My experience with support groups

And yet many IBDers and other people with chronic illnesses (that I know of) do not immediately join a support group. They may register with an Association, having been given the forms by their doctor, but they do not join and engage with the community.

I was diagnosed with Crohn’s Disease in 1998, yet it was not until 2003 that I began to make contact with other IBDers through online forums. And I did not actually meet (that is, have a face-to-face conversations with) fellow IBDers until 2006, eight years after diagnosis.

Genuinely engaging with the IBD community has:

• given me more knowledge about my disease;
• helped me feel more empowered and positive about my future; and
• introduced me to some inspiring people and new friends.

I should have done it years ago but (of course) at the time I had all sorts of perfectly reasonable reasons (excuses) not to.

And so, here are…

7 reasons not to join a support group (and why you should join anyway)

Reason 1: I have a medical problem and I will get whatever treatment I need and move on with my life. It won’t be a major part of my life and I don’t need a support group.

Unfortunately, it’s not that easy. IBD is a chronic illness, the course of the disease is unpredictable, and the symptoms are different for each patient. Even if you are one of the lucky people who have only minor flares or relapses, you will still need to manage lifelong medication and / or lifestyle changes associated with IBD.

It takes time to accept the full implications of being diagnosed with IBD. Until a cure is found the disease will be a part of your life – continuing education and communication with other IBDers will be the key to gaining a deeper understanding of (and therefore control over) your body, thoughts and emotions.

Reason 2: I don’t want to be defined by my disease – I don’t want this disease to be the centre of my life. Support groups encourage people to focus on their own problems to the exclusion of others, to wallow in self pity.

If you want to control the disease rather than the disease controlling you, then you need to take responsibility for educating yourself and building your support systems. Ignoring the disease guarantees the disease will become the centre of your life because at some point you will have a crisis (it will happen) and you will be forced to respond with all your energy and attention, just to stay afloat.

As for being selfish, surely the best thing you can do for your loved ones is look after your own physical and emotional health? The benefit is two-fold:

1. you avoid becoming a burden and drawing them into crisis situations which could have been avoided
2. you are in a better position and condition to contribute positively to their lives

It reminds me of the safety announcement they make before aeroplane flights: you have to put on your own oxygen mask before you can help others with theirs.

Reason 3: I don’t know these people – I might not like them they might not like me.

If you are nervous about attending a support group meeting for the first time, call the co-ordinator and have a chat about the usual format of the meetings and the kind of people who attend (age etc). He/she will usually be a very friendly individual and will help with any concerns you may have and you will know someone by name when you get there! Also support groups generally welcome friends and family – so take someone with you.

If you don’t like it you can leave. But chances are you will find a diverse group of people with at least one other person very similar to yourself!

Check in next week for the final 4 reasons not to join a support group…