Table 2 Descriptive themes generated through synthesis of qualitative studies with example accounts

Delayed diagnosis: a barrier to emotional wellbeing

“But when it’s inside the body and it’s not presenting itself in any see-able way, you just can’t explain to people. To be honest, you get fed up with it, of trying to explain.” [46]

“…but coming away with this diagnosis of just being out of shape disheartened me and I actually came out of the hospital upset with my free gym membership, which I was devastated about.” [46]

“My GP was unsympathetic. He gave me the distinct impression that he thought I was some sort of malingerer, even though I resisted the idea of taking time off work.” [24]

They [participants] experienced limitations in their [physical abilities and had trouble accomplishing daily life tasks […]. This period [prior to diagnosis] was described as glum, long, uncomfortable and frustrating [28].

The delay in diagnosis was described as upsetting, distressing and disheartening. Feelings of anger, frustration about the wasted time, and disappointment were expressed. The lack of knowledge and control over what they [the participants] had suffered was evident, as were feelings of depression [46].

The time until diagnosis was filled with pain and worries about the future [29].

Disruptive symptoms: a source of mood swings

“Suddenly, without warning pain would strike and I felt immobile, helpless and frustrated.” [24]

“I was great for 4 years and then I flared so badly I could barely walk to work or write. Lifting up a pencil was killing me. So you could be going along and everything is on track and then everything just falls apart.” [36]

“I had so much pain in my buttocks that I could not get on my feet from where I was sitting … […]. I could not reach my pain medicine. I could not get to the telephone to call a friend. The windows were open, the room was getting cold, and I could not get up …I had never felt so helpless before. I cried.” [31]

“AS often gives the sufferer a general feeling of being poorly or unwell. […]. Nerves are on edge and a more grumpy or aggressive mood is common. Tiredness and lethargy accompany this phase which tends to last a few days at a time.” [24]

During periods of remission …the fear of future disability would temporarily recede. However, when an exacerbation occurred, or if the treatment stopped working, initial fears were often reactivated. The variability in the course and presentation of the disease was …a major source of uncertainty and worry about the future [47].

Some [participants] described feeling guilty about how pain and fatigue made them more irritable and impatient in their relationships at work and at home [36].

The respondents said that times like these [a flare up] reminded them that they had an unpredictable disease. They had no power and felt helpless because they could do nothing to get relief or to predict what was likely to come in the future [33].

Work disability: a loss of self-esteem

“it’s frustrating but when you get frustrated you get annoyed because you have to go to work, you want to go to work. I enjoy work and you just can’t do the job and you end up getting, probably depressed.” [46]

‘It [fatigue] is sort of a quiet, silent thing that happens to you and you sit back at the end of the day and you think—I could have done that better, why didn’t I do that?” [36]

“I am frustrated that I have no stamina, that I’m such a weakling. That I can’t just suck it up and then stay at work, and that I have to go home early” [29].

“I missed calls at night. I didn’t wake up …they had gone without me and then you feel as if you are letting people down.” [38]

There was a divergence of views regarding reactions to changed working lives. The majority believed that changes were negative and engendered depressed mood; frustration; bitterness; anger; mood swings; feelings of inadequacy; and loss of choice, independence, self-esteem, self-confidence, and job satisfaction [37].

The men experienced a sense of unworthiness if they could not manage a job, feeling that they did not live up to society’s expectations [28].

Obstacles in interpersonal relationships: a trigger of distress

“I was exhausted I was in a lot of pain, I was tetchy and we did separate for 12 months. […]. I was pushing and pushing away I think because I could not understand why he wanted to be with me …” [48]

“I was a nightmare to live with …I couldn’t express myself, I couldn’t do anything because when you are not sleeping, because you are in such pain, you become a different man, you just do, you are not nice to be around and I wasn’t …I was a pig to live with […]” [30].

“In some social situations …I’m there, but I do not participate if I’m …not in form. …then I’m only sitting there and …seeming rather indifferent … That is really frustrating.” [33]

“One or two [friends] have dropped out [no longer in contact] because they couldn’t really accept that you just couldn’t go out with them every weekend.” [28]

As children grew older the difficulties centered on the negative feelings of both parents and children when pre-arranged commitments had to be cancelled due to parents having a ‘bad day’ …described by one father as the ‘I let you down again syndrome’ [26].

…the men experienced that it was often difficult for their friends to understand why they could not … help with practical issues when there were no visible signs [28].

Taking up exercise: ‘personal pride’ or unwelcomed reminders’

“Exercises create pain. You’ll feel the stiffness again. You feel it in your muscles … You don’t really want to be doing them. You don’t want the reminder of how limited you are in some things.” [40]

“It’s [not exercising] a lost opportunity and later on that night is when you will dwell on those type of things and all sorts of negative thoughts.” [40]

For some [participants], the ability to exercise to a level that was comparable to peers without AS was a source of personal pride [40].

…these patients were trying out the exercises suggested …and discovering their limitations as a therapy, both in terms of carrying them out in the manner suggested, and benefits for their symptoms. For some, these limitations to the treatments currently offered, combined with a lack of hope for better treatment in the future, seemed to exacerbate their low mood and frustration [25].

In addition to constantly having to take their illness into account, they [participants] believed …they were expected to find the time and energy to follow advice on treatment and exercise. Some of them felt guilty because they did not manage this [33].

Anti-TNF therapy: hope reignited despite concerns

“ …it has made such a big difference already in a relatively short space of time to my life and also mentally as well …Yes, all round, I can go a bit further, do more things, not as tired. Feels like I can conquer the world.” [30]

“I think [the condition took] about two months before it started to get better [after being on anti-TNF medication] …I started playing football again within a month and I never thought, never thought I would play football again ever …” [41]

“But one thing that does worry me – say if something was to happen and you couldn’t continue with it. That is the psychological thing about it; you think you know if you have to come off it [anti-TNF medication] how would I cope without. […] …to actually have a taste, you know, [of] normality and then go back, would probably be far worse than having not known what it was like …” [30]

“I was worried about what I would do if my disease progressed and the symptoms got worse despite the treatment.” [42]

Because of BT [Biologics Therapy] … the men sometimes forgot that they had a chronic disease because they could begin to live a mostly normal life again [28].

Many apprehensions appeared about being on a ‘strong’ treatment for a long period. Many patients believed that there must be a cost in terms of side effects for taking a medication that was very effective. This fear was reinforced by awareness that certain treatments were relatively recent and that there was limited long term experience with them [47].

Journey of acceptance: worry mixed with hope

“But it’s a double-edged sword, really, because getting the diagnosis is helpful and you know where you stand, and when you talk to people they don’t think you are swinging the lead or you are trying to get out of something… but then the flip-side is, oh God, this is me for the rest of my life; it’s not going to go away, it’s not going to go anywhere”. [46]

“I realized that I was not a hypochondriac …in that way the diagnosis was liberating” [28].

“I cannot look forward to the future optimistically. I have worries, […]. Will my disease worsen? Will I be bedridden? Will the medications help? I do not know.” [31]

“This is really upsetting to me as I think that perhaps my daughters will get this disease because of me and I will have given it to them.” [47]

“I have had to rethink how and what I do for a living, and do find full-time work very demanding… However, I have found a job which I really enjoy and feel very lucky to have found a second career which I love.” [37]

“I most likely spent approximately 3–4 years on that [the diagnosis], to basically accept that I had this thing” [28].

The other participants also experienced feelings of sadness and discouragement in connection with the diagnosis, but also relief when getting recognition of their pain after years of uncertainty and insecurity [29].

In the time following the diagnosis, they [participants] experienced a period in which they were uncertain about the changes that AS would bring, both in their private and professional lives. […]. They feared that they, within a few years, would be increasingly dependent on help from others to handle their everyday life [28].

Some patients wrote that AS had slowed their pace of living …and took time to enjoy things […] [39].