Talking to other people who live with aspergillosis can be enormously helpful. Someone else may understand the fatigue, uncertainty, treatment difficulties or everyday frustrations in a way that even supportive family and friends sometimes cannot.
Patient groups can provide friendship, practical ideas, reassurance and the simple knowledge that you are not the only person dealing with this illness.
But support groups can sometimes be difficult too. Reading about somebody who is very unwell can be frightening. Advice that was appropriate for one person may be completely inappropriate for another. And spending too much time reading about illness can occasionally leave you feeling more anxious rather than better supported.
During a recent Thursday Session, patients discussed how they use support groups and how different people find different levels of involvement helpful.
What can a patient support group give you?
Research into peer support for people living with long-term health conditions has found a wide range of potential benefits. These include emotional support, practical information, increased confidence, a greater sense of belonging and help with managing life with illness.
For people with an uncommon condition such as aspergillosis, meeting somebody else who understands the disease can be particularly valuable. You may never encounter another person with aspergillosis in everyday life.
Support does not always mean receiving advice. Sometimes it is simply being able to say, “This has happened to me too,” and knowing that somebody understands.
You don’t have to join every conversation
People participate in patient communities in very different ways.
Some people ask questions or contribute regularly. Others read discussions, watch recordings or listen to meetings without saying very much themselves. Some join only when something changes in their health and then disappear again when things settle down.
Research into online health communities suggests that this quieter form of participation can still be useful. You do not have to become an active member of a group to benefit from it.
If simply knowing that support is there when you need it is enough for you, that is a perfectly reasonable way to use a patient community.
Remember that the people you hear from are not necessarily typical
One important feature of patient groups is that the people who have something happening in their lives are often the people most likely to post.
Someone who is worried about a new symptom, struggling with treatment or experiencing a deterioration has a reason to ask for help. Someone whose aspergillosis has been stable for months may have much less reason to start a conversation.
This can make a support group appear as though everybody is having problems, even when many people in the wider patient community are relatively stable.
As we have discussed previously in Your Aspergillosis Story Is Not Someone Else’s Future, another patient’s experience can be valuable information, but it is not a prediction of what will happen to you.
Be careful with medical advice from other patients
Patients often accumulate considerable knowledge about their own illness. That experience can be extremely useful to others.
But there is an important distinction between sharing experience and giving medical advice.
“I had this side effect when I took this medicine” is useful lived experience.
“You should stop taking that medicine” is medical advice.
This distinction matters particularly in aspergillosis because the word covers several different diseases. Allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA), Aspergillus bronchitis and invasive aspergillosis are not interchangeable conditions. Patients may also have asthma, bronchiectasis, COPD or other illnesses alongside aspergillosis.
A treatment that makes sense for one person may therefore be unsuitable for somebody else.
If something you read in a patient group makes you think you should change your medication or treatment, discuss it with your healthcare team first.
Good moderation can help
Peer support works because patients can talk openly to one another. It should not become another medical appointment.
However, some degree of moderation can be valuable, particularly when discussions move into medical advice.
A well-run community can allow people to share experiences while correcting potentially dangerous misunderstandings, directing people towards reliable information and reminding participants when a question really needs to be discussed with a healthcare professional.
That does not reduce the value of lived experience. It helps protect it.
What if a support group makes me anxious?
This can happen.
Research on peer support has found many positive effects, but studies also describe possible negative experiences, including distress from reading about other people’s illness, information overload and anxiety.
You may notice that you enter a group looking for reassurance but leave worrying about complications that you had never previously considered.
That doesn’t necessarily mean there is anything wrong with the group. It may simply mean that you need a different level of engagement at that particular point in your illness.
You can mute notifications. Read only subjects relevant to you. Attend occasionally rather than every week. Stop reading a discussion that is upsetting you. Or take a break completely and return when you want to.
Support should be available when you need it, not become another obligation.
Check frightening information before assuming it applies to you
If somebody describes a serious complication or a difficult treatment experience, it is natural to wonder whether the same thing could happen to you.
Before drawing that conclusion, remember that you may know very little about that person’s complete medical situation.
They may have a different type of aspergillosis, other lung diseases, a different immune system, different medications or a very different medical history.
If something genuinely concerns you, use the discussion as a starting point for a question rather than an answer:
“I read about this happening to another person with aspergillosis. Is this something that is relevant to me?”
That is a useful question to take to your clinical team.
Find the kind of support that works for you
A live patient meeting will not suit everybody.
Some people enjoy conversation and getting to know a small group of familiar faces. Others prefer a larger online community where they can read occasionally without participating. Some prefer written information, videos or recordings. Others mainly want support from family, friends or their healthcare team.
Your preference may also change. You might want considerable support soon after diagnosis or during a difficult period, but very little when your condition is stable.
There is no requirement to become part of a patient community simply because you have aspergillosis.
A useful question to ask yourself
Every so often, ask:
“Is being part of this group helping me?”
If it helps you understand your illness, feel less isolated, discover useful questions to ask or simply enjoy talking to people who understand, it is doing something valuable.
If it repeatedly leaves you frightened, overwhelmed or feeling that everybody else’s problems are going to become yours, change how you use it or take a break.
Joining the Thursday Sessions
The National Aspergillosis Centre holds informal online Thursday Sessions each week for people affected by aspergillosis.
You are welcome to join the conversation, ask questions or simply listen. There is no pressure to speak and no expectation that you attend every week.
You can also explore other ways of connecting with people affected by aspergillosis through the NAC Communities Hub.
The main message
Patient communities can provide something that medical information alone cannot: the experience of other people who actually live with the condition.
Use that experience as support, perspective and a source of questions — but not as a prediction of your future or a replacement for individual medical advice.
And participate as much or as little as helps you. A good support community should be there when you need it.
This article is for general information and support and does not replace advice from your healthcare team. Do not change prescribed medication or treatment on the basis of advice from other patients without discussing it with an appropriate healthcare professional.
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