Living with an invisible illness

Dawn is a patient with common variable immunodeficiency (CVID).

This is one type of some 300 primary immunodeficiency diseases. Right now there is no cure.

The result of these conditions can be many hospital appointments and going back and forth between doctors for different opinions.

According to the Immune Deficiency Foundation, CVID affects around 1 in 25,000 people; Dawn describes it as an invisible illness, “what makes you sick is what makes everyone sick, and so everyone thinks they know what its like.”

The illness means that when the person gets a simple cold, they could be very ill and out of action for a long while.

Dawn recalls the times she has had to cancel on friends due to her not being well enough to get out: “With a primary immunodeficiency a bad infection comes out of the blue, you don’t know its coming and you’re not prepared for it.”

“You can be feeling well one day and the next day you can feel dreadful. That might happen to me every couple of weeks and then you don’t get better in a couple of days,” she told Artefact.

“That starts to take its toll on friendships because sometimes people think you’re being a bit off with them as you keep cancelling.”

It’s not difficult to ask the question: “If you only have a cold then why shouldn’t you go out and socialise?”

Dawn knows this only too well. Because everyone knows what it’s like to have a cold, they assume it’s the same for her.

She states that it’s “so difficult to put into words. Perhaps people can’t understand what it’s like to feel too weak to get up and dressed or go out.”

“When I tell people I have a cold it might mean that I have two or three infections at any one time, but that’s too complicated to tell everyone.”

She tells us how if she phoned a friend to say that she had a chest infection, that friend would most likely express sympathy towards her.

But she discovered that there aren’t too many people who would fully understand her condition and the reasons why sometimes she has to call up and cancel the plans that they had made.

If Dawn gets sick and the infection doesn’t pass for a while, meaning that she can’t get out of the house, it starts to make her feel isolated.

Because common illnesses make someone with CVID much sicker, people always tell her that they will see her when she is well, but Dawn says that this is the reason she begins to feel isolated.

“It’s a rare person that would say ‘I’m very sorry that you’re not feeling well, is there anything I can do?’ or ‘would you like me to come and see you?’ That’s when you become isolated, and it is then quite difficult to rebuild those social connections.”

Relationships, understandably, are something else that can be a challenge as someone with a long-term health condition.

“If I was lying in bed with soup dribbled down my grubby vest I could keep that to myself and present the best of myself. I wanted to present myself at best to the people who mattered to me.”

Dawn has had two partners in her life, one sadly passed away. He also had a long-term health condition, which she felt, as a couple, gave them an unspoken understanding.

“There would be times when I would be doing my best at my pretending that everything was fine and my late partner would look at me and say: ‘I think we’ll just stay in and have a chat tonight shall we?’ because he could see [how things were], and it meant that I didn’t have to explain.”

The other partner wasn’t quite the same, but Dawn insists that this wasn’t a deficit in his character, nor is it in any person.

It’s a kind of two-way understanding; Dawn knows that it’s very difficult for someone to understand something that they haven’t been through themselves.

She says that in terms of her own self-esteem and sense of self, with both of her relationships, she chose not to expose all the gory details of her health issues.

“I preferred not to live with them, I preferred to see them when I was well and have some control over that. If I was lying in bed with soup dribbled down my grubby vest I could keep that to myself and present the best of me to the people who mattered.”

There is a definite impact on any social relationship to someone with CVID, and any other long-term health condition.

Intravenous injection bags

One of the treatments that people with primary immuno deficiencies have to have is either an intravenous infusion (at hospital) of what is called immunoglobulin.

This is, put simply, something to replace one’s missing immune system.

Or you can inject them at home through syringes subcutaneously (into your stomach or your thighs).

Dawn says that her second partner found that difficult to deal with, and points out that this isn’t necessarily a bad quality in a person, it takes a strong person to cope with something like that happening to someone you love.

As you can imagine, the pressure on someone’s family when they have a serious condition like CVID is quite severe, however Dawn says that her family made it much easier for her to cope with.

It was around her eighteenth birthday that she started to get really sick, in the period between school and university.

Her family were always worried but tried to stay calm for her sake, so that her quality of life was kept the best it could be for someone with CVID.

“My mother was quite a worrier for much of her life and I think she must have been incredibly brave just to let me go [away to university] so I’m thankful for that and it set me in good stead for life.”

“There’s not anything I ever stopped myself doing and I didn’t get any negative messages from my family, neither did I have to hide how I was feeling because I didn’t get an overreaction from my family.”

“There may have been some sense that ‘if we don’t let her know that we’ve all been up all night with vomiting and diarrhoea she will be fine’ when people are coming to visit.”

However, sometimes there are members of her family who find it difficult to understand that she can get really sick from just a cold, she thinks sometimes that her family thinks what she doesn’t know won’t hurt her.

“It goes back to that lack of understanding that people have of this kind of invisible condition, and I think certainly there would have been parts of my family that didn’t quite get that if I was exposed to an infection, I had the potential to get really sick,” she explained.

“There may have been some sense that ‘if we don’t let her know that we’ve all been up all night with vomiting and diarrhoea she will be fine’ when people are coming to visit.”

People with invisible conditions sometimes don’t want to tell anyone exactly how they’re feeling because they don’t want to burden people.

There have been times in her life when Dawn had to deal with leaving things until the next week so that she didn’t bother her friends, so she felt.

“Sometimes I can’t, as has happened recently, unpack my shopping delivery or I can’t change my bed linen.”

Dawn currently has a long term virus which she has had for a number of years which causes nausea and diarrhoea.

This is as well as severe inflammation in her joints which affects her mobility and is very painful.

“My recent episode that I’m in at the moment has lasted four months of really having quite challenging symptoms to deal with.”

“I know that if I ask for help it’s not a one off. Asking people to help once is one thing. Even now I look at my diary and I think well I won’t get shopping in on that day I’ll leave it for another week and then perhaps so and so won’t mind if I ask them.”

Primary immunodeficiencies aren’t exclusive in the fact that they get harder as the person gets older, Dawn used to have a lot more physical resilience when she was aged 20-40.

I think my condition in different ways has always coloured my life. I think the nature of that colour has changed.”

But now, she says that she doesn’t ‘bounce back’ from phases of ill health as quickly anymore.

“I think my condition in different ways has always coloured my life. I think the nature of that colour has changed.”

Dawn says that when she was younger “on the surface I was in a career, doing well with friendships, going out and socialising, enjoying hobbies, going to the gym, going to the theatre and for meals etc. etc. Behind the scenes I think I probably played some fairly sophisticated juggling.”

“I had very high attendance at hospital appointments so I always had to say to employers ‘look I’ve got this appointment but I’ll make up the hours’.”

“I probably then didn’t have as much time for social relationships because I was busy patching up any impact on my career.”

It can be a matter of days between Dawn feeling able to have a catch up with friends and being bed bound due to pain (pictures taken 3 days apart)

It can be a matter of days between Dawn feeling able to have a catch up with friends and being bed bound due to pain (pictures taken 3 days apart)

Because the condition is so complex, patients are given multiple appointments with multiple different specialists; they are given a lot of information too.

At one point Dawn was involved with over six specialisms doing their tests, providing diagnoses, and making their hypotheses as to what was going on.

It’s a heavy load for a person to carry on top of the physical symptoms they’re already experiencing and the impact on their life.

In Dawn’s opinion, there are some reasonably simple things that clinicians can do to communicate with each other to streamline the experience that the patient has and improve the quality of the treatment.

“If your specialists are not communicating with each other and they’re all operating from their own individual mind-set looking at things through their own glasses, then there is a real danger that you can become a bit of a lab-rat,” she says.

“With a rare condition one specialism might not fully understand how this particular treatment will impact on that particular aspect of your condition.”

“In an ideal world, one specialist will say ‘in my experience this is the bit that I know, this is what I don’t know and these seem to be the options and the risks…’ I can consider what options are suitable to me, what risks I’m willing to take and we do it as grown ups in a mature patient-clinician relationship,” she told us.

“That takes a particular way of working, particular skills and competence in the clinicians to communicate effectively. It’s by no means standard.”

Mental health isn’t addressed as frequently as Dawn would ideally want, there are psychological services that are there for people to access, but Dawn feels that anyone in a medical position should also show care.

In some aspects of my life my hairdresser actually enquires more about how I’m getting on than my healthcare professionals.”

“There’s something about the human response to someone who’s going through a life changing health episode, which isn’t about referring them to a psychologist,” Dawn says.

“It’s about being kind; it’s about recognising and enquiring. In some aspects of my life my hairdresser actually enquires more about how I’m getting on than my healthcare professionals.”

“It’s about not solely focusing on making me better and actually focusing on me, she says. “I think it’s about healthcare professionals being confident that they can enquire about you even if they have nothing to offer to make it better.”

“The enquiring about you is a demonstration of human empathy and compassion. Closing down a conversation about you because ‘I’m worried that I can’t offer anything to change it’ is a denial and rejection of what’s happening to the patient.”

It can become quite difficult as a patient when all of this is going on, and you’re losing everything around you, to keep a level head and to stay sane.

For someone with severe pain on top of various stresses such as money worries and figuring out how to keep your social circle alive, the last thing a CVID patient needs is to have to go and seek their own help.

Dawn has found peace with her illness in recent months and is very grateful to the professionals who have made it easier for her.

“I did get to a point where I was tipping into a crisis really in terms of feeling quite distressed about how I wished and wanted to go forward with this picture of deteriorating health in a compassion vacuum.”

“I ended up seeking out the right kind of professional support for myself, to offer me that compassion. There has been a turning point and I am now much more at peace with my condition. I don’t like it, it frustrates me and I would love to be a different person,” she says.

“I’d love to be running out to an art gallery right now thank you very much! But I’m much more at peace with the limitations that I face on a day-to-day basis and I’m less traumatised by it.”

“I still have aspirations for things to be different but I’m gaining greater acceptance of that change. It’s great that I’ve found that, it’s a shame that I was the one who had to [go out on my own and] find it.”

 

 

 


Photos courtesy of interviewee and NIAID via Flickr CC