Arthritis in the Family: Navigating a Loved One’s Diagnosis

 An inflammatory arthritis diagnosis doesn’t just impact the patient. Typically, we hear the story of the individual living with the disease, forgetting or not recognizing that their loved ones experience a different type of pain – feelings of helplessness and searching for a new place in the patient’s life.

Phalgun Joshi knows the experience well. Both his wife and daughter live with rheumatoid arthritis (RA). In the beginning, he struggled to understand the disease, to know how to help and to accept that he could never take the pain away. Now, reflecting on those years, Phalgun believes patience is key. To his surprise, RA has brought him and his wife even closer together.  

Can you tell me about your relationship with RA?

Phalgun Joshi and his wife, Alison Hoens

My wife, Alison, had been experiencing worsening joint pain for quite a while before her RA diagnosis. She had experienced a few sports injuries over the time that we had been together (over 20 years) so we both thought the pain was related to these injuries. However, when it got worse, she saw a rheumatologist, and I remember her coming home after to share that she been diagnosed with RA. I had learned about RA being an autoimmune disease in my immunology courses when I was at  university, but I did not have an appreciation of what it was like to live with it. When I learned of her diagnosis, I wasn’t aware of the impact it would have on her day-to-day life, her prognosis or kinds of treatment that she would receive, despite what I was able to learn from the resources available online at the time.

During the time just before, and right after the diagnosis, I noticed that Alison, because of the fatigue and pain, found it difficult to do things for the family that she had previously enjoyed. For example, Alison loved working in the garden but was sad that she was unable to now mow the lawn with our hand-mower. I also noticed that she was having difficulty with other routine tasks, such as chopping vegetables and standing over the stove to cook. It became necessary for me to take on these tasks, which, initially was difficult for her to accept.

We were also unable to participate in a number of outdoor activities together that we had previously enjoyed. The fatigue and pain meant that we couldn’t go on long walks or drives together. Alison is fiercely independent, which I love about her, and it was difficult for me to see her needing more help from my daughters and myself to get through the day. It became common for me to come home from work and see Alison sitting with her feet soaking in cold water to help her ease the pain in her feet.

I also noticed that she always looked like she was in pain, although, being who she was, she never complained.

The complicated drug regime and the side effects were eye-opening. I began to understand that RA is a complicated disease…you don’t just go to a doctor, have a single drug prescribed and get better quickly. Alison had to take many different types of drugs, and it appeared that there was quite a bit of trial and error in which treatments she received based on how well she responded. Although many people living with RA can take their prescribed medications without too many side effects, this was not, and still isn’t, the case for Alison.

Did you know anyone else who had RA before Alison was diagnosed?

I had an out-of-town roommate when I was in university who had RA and who dealt with her pain very privately. Whenever she was in pain, she would just stay in her room, and I wouldn’t see her for days. But at that time, I didn’t understand the impact of the disease on her. It’s only now that I realize how RA is such an unpredictable, full-body disease and I can only now appreciate what my roommate was going through and how challenging it must have been without her family being nearby to support her whenever the disease flared.

Also, a couple of years before Alison was diagnosed, one of my work colleagues had been diagnosed with RA. She had told me that she was in constant pain, had to stop doing things she enjoyed like running and hiking, and had to take some time off work after her diagnosis to take care of herself. However, after a few years of treatment, she was back to working full-time. She told me that her disease was under control,  and that she had even gone back to running and hiking again. I thought this was the norm- that people were diagnosed with RA, received appropriate treatment, got better, and went back to living their pre-RA lives.

Fortunately, for many people, this is the case. But Alison’s disease seemed to be more complicated. After nearly seven years of living with RA and trying multiple treatment regimens, Alison’s condition has improved overall; however, she continues to experience fatigue, flare-ups, and medication-related side effects.

Can you tell me how you felt when your daughter was diagnosed with RA?

I was heartbroken when Maya was diagnosed with RA, having seen what impact the disease had on Alison. It was tough to see someone so young diagnosed with this disease. I was saddened to think that she would have to live with symptoms and deal with possible side effects of the drugs that I had seen with Alison. Maya was 17 years old at the time of her diagnosis and I knew that RA would put limitations on her physical abilities.  For example, she loved the outdoors and playing soccer, and I realized that living with the disease may limit her ability to continue enjoying these activities. But even though I was sad to learn of her diagnosis,  I felt comforted knowing that Maya was in good hands with her rheumatologist, and that Alison would be there for her to support her based on her own experience living with the disease.

What were some of the biggest challenges you experienced?

The biggest challenge was not knowing how I could help Alison manage her disease, or how to help her get better. I have realized that dealing with RA mentally is just as important as taking the prescribed drugs. I found that I was limited in how I could help in both areas. I could do chores around the house, but I often didn’t know the right things to say to Alison in our conversations that would help her cope with her pain. I realized that I couldn’t offer her any advice on how to deal with the disease in her day-to-day life. I realized that I couldn’t be Alison’s counsellor. Fortunately, she was eventually surrounded by a wonderful community of people with autoimmune diseases and a counsellor who she really liked. Her interactions with the members on the Arthritis Patient Advisory Board at Arthritis Research Canada have been really important for her. Alison also values her relationships with the Arthritis Research Canada scientists and is grateful to be involved in RA-related research. It is wonderful that she is exposed to the best knowledge in clinical care and is able contribute to RA research. Her care at the Mary Pack Arthritis Centre is outstanding. She had the right supports from her friends, colleagues, and medical team. I realized that I just had to be her husband – and nothing more.

What kind of tips might you give to others dealing with an arthritis diagnosis in the family?

The first tip is to be patient- very patient- with the loved one living with the disease. As a spouse or significant other, you will see the disease manifest itself in unexpected ways and at unexpected times. Flare-ups, fatigue, and the drug side effects can be unpredictable. You can plan some activities, but be ready to cancel or change them with little notice. Being patient, flexible, and understanding are very important. However, you also need to be patient with yourself. It takes time and energy to learn how to ‘dance’ with this disease. You will not have all the answers. You should not expect that you will do the right thing or say the right thing to make life easier for both of you. Expectations between you and your loved ones have to be realistic. You can’t be everything to your loved one, but you can focus on providing a safe environment for the person to feel comfortable.

The second tip is to communicate openly with the loved one about when and what help they need. You don’t have to step in and do everything for the other person. Respect the need for your loved one to be independent and to continue to be in control of what they can and cannot do. What they may have needed help with at one point may be something that they may be able to, and want to, do independently at another time. My asking Alison when she needs help and following up accordingly helps us both.

Did you ever personally seek help after Alison was diagnosed?

There was a period when Alison and I were taking care of elderly parents on both sides of the family. There were frequent medical appointments, hospital admissions and the day-to-day, home-related issues such as grocery shopping, arranging for appliance repairs/replacements, bill payments etc. that needed to be taken care of for them. These responsibilities were in addition to the regular work- and parenting- related obligations and stresses that we had. So, dealing with all these issues as well as RA with both Maya and Alison was, at times, overwhelming.

I began to see a counsellor to help me find ways to cope with these demands and challenges, and I have to admit that I found the experience to be very useful. The counsellor was effective in getting me to put things into perspective and helped me realize the need to take care of myself physically and mentally. I learned several strategies to help me cope, which I still use today. I would encourage people not to hesitate to seek counselling if they themselves need help supporting a loved one with RA. No matter how confident and informed you think you are, arthritis is such a complicated condition that the unpredictability and complexity of the symptoms will be humbling when figuring out the right way to provide support that is meaningful and sustainable.

Did you experience any challenges with friends and family understanding what was happening after Alison’s diagnosis?

Both Alison and our immediate families now understand and appreciate the challenges that Alison and Maya face daily. In the beginning, it was difficult with some of our friends. We often turned down invitations to functions, or had to cancel at the last minute if Alison had fatigue or pain. Sometimes, we would go to a function or event and would then have to leave early if Alison began to feel unwell. In the beginning, we could sense that not everyone understood why we were “unreliable guests” but over time, they have all become more understanding as we have been able to share Alison’s challenges with them.

There can sometimes be confusion between osteoarthritis and rheumatoid arthritis, unless someone knows the difference. We often tell people that Alison and Maya have rheumatoid arthritis and they often say something like, “Oh, my grandmother has osteoarthritis but she takes Tylenol and she feels better.” Not everyone has to or will understand. I have learned that just as it is important to be patient with your loved one and yourself, you have to be patient with family and friends as well, who may not understand the disease and the complexity of the symptoms.

Is there anything you would like people to understand about arthritis?

Maya (right) and her older sister Tarra (left). Maya was diagnosed with rheumatoid arthritis at 17.

First, RA is a heterogeneous disease – different people are affected and respond to prescribed drugs in different ways. It is unfortunate that personalized treatment is not yet available. There seems to be somewhat  of a trial and error approach in the treatment of the disease. This is not a criticism of the physicians, as we have great rheumatologists here in BC and across Canada. I just don’t think there is enough evidence available linking an individual’s genetic makeup or environmental factors with the disease. It is currently difficult to predict the trajectory of the disease at the time of diagnosis and to be confident in what treatment would be most effective.

Second, because of the heterogeneity of the disease and individual circumstances, support for different people living with RA will mean different things. The support that Maya needs from me as her father is different than what Alison needs from me as her spouse. Maya continues to get quite a bit of help from Alison as someone experienced with RA and based on their mother-daughter relationship, with more candid conversations possible between them. My support to Maya as her father is often limited to helping drive her to work, school or social functions or sometimes just helping her clean her room, which seems to work very well for all of us.

Third, the support for a person living with RA is a team effort. The clinical team (family doctor, rheumatologist, physiotherapist, occupational therapist, pharmacist, and counsellor), family, co-workers, and employers all play a role in supporting the individual. Alison has an amazing support system of friends as well. They provide her with a sounding board  – a support that the family and clinical team cannot always provide. It’s truly a holistic and team approach. There isn’t a set of rules for how best to care for the whole person who is living with RA.

Is there anything else you would like to add?

Something that can be easily overlooked is the challenge of comfort during touch. For example, a simple gesture like holding hands when walking can be affected. Sometimes I reach out to hold Alison’s hand and she tells me that her wrists hurt too much or when I go to hug her, she tells me that her shoulders hurt. On the other hand, lately her balance has been affected, so she has to hold on to me whenever we are walking together. We have therefore both needed to be patient with each other when it has come to physical contact.

Despite all the challenges, I believe that arthritis may have brought Alison and I even closer together. In any relationship, there are always sources of irritation, arguments or angst. But this disease has put a lot into perspective – some of those things that make us irritated, angry or frustrated with each other just don’t seem worth getting worked up about. Alison’s RA helps us to look at the bigger picture, our combined physical and mental health and being there for each other for support. Although there is still more work to be done, I think that we have become more forgiving, understanding and patient with each other. Our relationship is definitely stronger than it was before her RA.

The biggest surprise has been that Alison’s RA has made me personally more introspective and self-aware. It has brought out a nurturing part of me that I didn’t know I had. It has forced me to put things into perspective whenever I face stressful or challenging situations, and to be grateful for what I have in my life. Finally, it has given me the chance to learn skills to take care of myself, emotionally and physically, so that I can be a better support for Alison and Maya, and have a more positive and healthier outlook on life.