Former Arizona State Senator Humbly Embraces Arthritis Diagnosis

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Former Arizona State Senator Carolyn Allen did not tell friends and colleagues when she was diagnosed with rheumatoid arthritis nearly 40 years ago. Today she is an outspoken Arthritis Foundation volunteer and is accepting her diagnosis with grace and humility.

Michelle King Robson:
Arthritis is so much more than we think. It is over 100 different diseases and 50 million adult Americans have doctor-diagnosed arthritis. That number is expected to grow to more than 67 million by 2030. But those are just the numbers.

Today we put a face on rheumatoid arthritis. Recently at the Arthritis Foundation’s red carpet event I got a chance to meet former state senator Carolyn Allen.

Carolyn Allen:

I was diagnosed about 40 years ago actually, give or take, with rheumatoid arthritis.

Michelle King Robson:
I didn’t realize it was 40 years ago.

Carolyn Allen:
And I had some symptoms which at that time I was living in Colorado and I was working for an advertising agency, and if anybody has been watching “Mad Men” that was my life for quite a while. It was a good life and I had recently remarried and I started having symptoms I chose to ignore. My shoe size went from 6-and-half to 8-and-half but I just bought in different shoes because I was busy.

Michelle King Robson:
Oh so you just gave no fright, right, and you had no idea what it was. You just thought,”Oh, my feet are growing.”

Carolyn Allen:
I thought I had a Morton’s neuroma on my right foot and had to have it taken out and the doctor called me and my new husband in to say, “You have a rheumatoid nodule. Are you having other symptoms?”

Michelle King Robson:
Shocked and newly married Carolyn Allen did not let rheumatoid arthritis slow her down, but Carolyn admits there was more to it.

Carolyn Allen:
And I lived in denial a very long time because I didn’t want my friends to know. I was invited by Dr. Howard, my rheumatologist, to speak at the Lion’s breakfast and I invited some of my colleagues from the legislature and it was the very first time that I had publicly said, “My name is Carolyn Allen; I have rheumatoid arthritis,” and there were some tears shared in that audience because no, I don’t talk about it. I still don’t talk about it to any degree. I don’t want sympathy.

I want to be perceived the same as you or anybody else out in our community. Please don’t continue to ask me, which a lot of people meaning, well-meaning, how are you really doing, like I am really doing, and I don’t want that. I appreciate people care, but just to accept I say ‘fine’. “Really?” They comes back with a ‘really’ - yes.

Michelle King Robson:
And no matter what your condition, Carolyn has this advice:

Carolyn Allen:
Finding a doctor is very important because I think the general practitioner – they do not understand. They do not understand the symptoms necessarily, so finding a good doctor is so important.

Michelle King Robson:
Yeah, and you need to advocate for yourself, right? That’s what I am sure you have learned through your experience and as I have learned through mine that it’s all about taking charge of your own health and wellness because if you don’t do it, no one can, and the fact that you were able to find this amazing doctor, and I always say you want to go to the same doctor, I mean you want to go to that doctor who specializes in that thing and who does it every single day.

And as you would for your loved one, and I think too we take care of everybody, right? I mean you are taking care of the whole entire state – that’s pretty extraordinary, and on top of it, then you are having to take care of yourself.

Carolyn Allen:
Well, I got involved with the Arthritis Foundation through the juvenile arthritis. I was invited to a Sloop-to-Summer and Nate, a young man who is currently I believe working at the Arthritis Foundation, but I watched Nate go from being lifted out of the wheelchair and put at the podium to win one day another Sloop-to-Summer from the back of the room, Nate walked on his own – painful to watch, but I drove home and tears, and I said, “Don’t you ever feel sorry for yourself again”. This young man can conquer as much as he has and never complains; you are never going to complaint again either.

Michelle King Robson:
Now on a product called Remicade, Carolyn has been able to combine will and medication to lead a full life and advocate for others, both as a public servant and an outspoken Arthritis Foundation volunteer.

Carolyn Allen:
And I realize that my story helps others and it would be selfish for me not to try to help others. I don’t need to hide behind a bush and say ‘no, no, no don’t look at me’. I need to be where I am now. I need to be helping those people come out from behind the bush like I was hiding.

Michelle King Robson:
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