Fictional Personas for Rheumatoid Arthritis: Samantha Gordon

by Paul Curzon, Queen Mary University of London

Personas are a design tool used to help designers focus their design for the real goals of real people. They are detailed fictional descriptions of people, their lives, and goals. These personas are to help design for people with rheumatoid arthritis. Find out more.

Samantha Gordon

Samantha was not really coping, despite putting on a brave face, and feeling ever more lonely. Her rheumatologist spotted things were worse than she was saying and a change of medication is now helping.

• Age 66, Female
• Arthritis for 12 years
• Getting worse
• Struggles to stand
• Exhausted much of time
• Stoic. Doesn't want to cause trouble to others
• Daughter visits weekly
• Recently started taking biologic drugs

Samantha is 66. She has had arthritis for 12 years. Although originally it was very mild, it has gradually been getting worse.

If people ask how she is she always says, "I'm doing fine, thank you". Often people tell her she is looking really well, when inside she is actually feeling awful, and that just makes her feel worse. She tells people she copes with her arthritis when they do explicitly ask, as she doesn't want to cause anyone any trouble. She also often plays down her problems at GP and rheumatologist appointments. She tells them that she is coping. After all, she knows it could be a lot worse. In reality she isn't really coping well at all. Just getting to the clinic is a struggle that exhausts her.

She would like the pain to be lessened, and for flares to happen less often, but she doesn't want to be a bother about it. She is so used to the constant pain now. Her body seems to have adjusted to it to some extent, so even when she is in pain, it doesn't feel quite so terrible as it once was, back when she struggled to deal with it at all. However, sometimes when she has flares it seems to go up a level, and she has to get used to the pain all over again. She knows though that if she rests it will eventually start to subside. Then the problem will be that she will be so stiff she can't get up.

During flares, she feels totally exhausted and spends a lot of time in bed or lying on the sofa if she got that far. On bad days, just getting dressed in the morning leaves her feeling so tired she just wants to lie back down again. It feels like a thick fog descends on her brain too, and she can't even think what needs to be done next, never mind how to do it. Just trying to think makes her feel even more exhausted. Once she is this fatigued it will last for hours and sometimes days and days. The exhaustion seems to go on even after the pain of the flares has improved. It also can happen suddenly - in the middle of the day for example even though she wasn't doing anything that should have been exhausting. Once she is up and about she tries to keep going, as she knows once she sits down, the stiffness will set in and she will then be stuck. The trouble is this also means she overdoes it, keeping going until she is exhausted and then things can be worse for longer.

An earlier appointment was cancelled by the hospital so she hadn't seen a hospital clinician for 8 months before her most recent one. She does see her GP but getting an appointment means being on the phone for 40 minutes even if you phone the moment the lines open. Since the clinician's appointment before the cancellation she had several flares, mainly minor, but one that was quite bad. After that she had more trouble moving around. Even though the worst of the flare was over, she struggled to stand up so spent a lot of time just sitting in her armchair. She knows there isn't much point trying to get an appointment with the hospital rheumatologist when she actually has a flare, as the soonest you get an appointment is a month and then it is over anyway.

However, when she did have the rescheduled appointment at the hospital, the rheumatologist seemed to be worried about her straight away. Samantha assured him she was managing, but her rheumatologist checked her joints and asked about how much she was getting out and about and then immediately suggested there were things that could be done. He checked her records and mentioned something about the fact that she had changed drugs early on due to side effects. He then announced he would be starting her on new powerful drugs, that were injections. It took time to sort out after the appointment before she started but they get delivered and a nurse showed her how to do the injections. She is back having lots of blood tests again, though at least that can be done at a clinic not far from home. By the second injection she was already feeling a bit better and the stiffness cleared up apart from first thing in the morning, so she has now been out to the cafe to meet her friends again.

One really bad flare was a result of an unrelated routine operation she needed. Her rheumatologist had said it was fine to keep taking the drugs she was on during an operation, so she shouldn't stop. The surgeon though told her it was better to stop taking them until afterwards. She didn't know who to believe, and worried a lot about it, but in the end stopped her drugs to be on the safe side. The consequence though was that she was really ill for months after, pretty well the worst she has been.

She is increasingly feeling lonely. She has a son and a daughter. Her daughter visits her every weekend, bringing her weekly shopping, but she can't visit during the week as she has a full time job, often working long hours, with a long commute. Her son lives a 3-hour drive away, so she doesn't see him so much. He visits with her grandchildren mainly on special occasions. Her husband died 15 years ago, and since then she has been mainly on her own. She used to meet with two of her local friends in a nearby cafe every tuesday lunchtime, but since the last flare she hasn't managed to.

Until she retired she had been the PA to a senior executive in an oil company where she had worked for 36 years. She is used to using a computer, though retired before smartphones and tablets really took over. She has a simple mobile phone, though it is now a bit fiddly to use, and really difficult when her fingers are swollen. Her eyesight is also not as good as it was, which doesn't help.

She had always been active, though never sporting. She always loved walking in the local woods, even after getting arthritis, but that got harder and harder, especially because of the exhaustion, so she has largely given up trying. She used to cook a lot, but now is doing mainly simple things, cooking a lot of ready meals in the microwave because it is all she can manage.

Personal Goals:

• To avoid causing bother to others.
• To be less lonely
• To be exhausted less often
• To be in less pain
• To be sure to know who to believe when given conflicting advice
• To not have to worry so much about taking the different drugs

Practical Goals

• To be able to stand more easily and move around without help.
• To be able to walk locally more often and go to her tuesday lunches again.
• To be able to get help as soon as flares start