Advocating For Myself When Struggling With A Disability

As my condition, psoriatic arthritis, became more complicated, more professionals became involved.

Who sees the whole person when evaluating for disability

Doctors. Specialists. Occupational therapists. Workplace health professionals. Functional capacity assessors. Human resources. Insurers. Each has a role. Each asks different questions. Each produces an opinion, report, recommendation, or assessment.

• One professional looks at the disease.
• Another measures my grip and dexterity.
• Another assesses how long I may tolerate certain activities.
• Someone considers whether I can perform my job.
• Someone else considers possible accommodations.
• An insurer may eventually ask whether I meet the particular definition of disability contained in a policy.

All of those questions may be legitimate.

But somewhere along the way I found myself asking: Who connects them?

Who sees the whole person when evaluating for disability

Who takes the painful hands, visible deformity, reduced grip, impaired dexterity, fatigue, computer demands, broken plates, dropped pots, burn, difficulty with personal care, and an occupation dependent upon those same hands — and puts them together?

Who asks not simply what one test or report says, but what all of it means for the life of the person being assessed?

Who sees the whole person?

Advocacy falls on the person who is struggling

Perhaps one of the most exhausting parts of this journey has been discovering how much advocacy can fall back onto the person who is already struggling.

I have had to explain that performing a task during an assessment does not necessarily mean I can sustain it throughout a working day.

• That computer work is not simply "sitting."
• That the function I use for work is the same function I need for everyday.
• That removing one physical demand does not necessarily solve another.
• That an accommodation can help without restoring lost function.

And, repeatedly, that "can do" and "can sustain" are not the same thing.

Project manager of my own disability

Sometimes it feels as though I have become the project manager of my own disability.

I collect reports. I provide the history. I describe the job. I explain what happens at home. I correct misunderstandings.

I try to connect medical evidence to functional evidence, functional evidence to occupational demands, and occupational demands to everyday life.

And I do all of this while living with the condition everyone is assessing.

There is a strange irony in having to use so much of your remaining capacity to demonstrate how limited that capacity has become.

I need someone to walk with me while I try to qualify for disability

I have had many professional opinions about me.

What I have often needed is someone beside me.

Not somebody to automatically agree with me. Not somebody to guarantee an outcome. And not somebody to speak for me when I can speak for myself.

I needed someone capable of looking across the different pieces and saying:

I have looked at the medical evidence. I have looked at the functional evidence. I understand the demands of this person's occupation. I understand what is happening to her activities of daily living. Now let us put those things together.

Because a person is more than a collection of reports.

My disability is more than a diagnosis

And disability is more than a diagnosis.

• My specialist can describe my disease.
• An occupational therapist can measure my function.
• A functional assessment can examine my work capacity.
• An employer can describe my job.
• An insurer can apply its policy definition.

Assessments don't tell the whole story

But none of those things, viewed alone, tells the whole story of what it is like to live my life with these hands.

Perhaps what people with complex chronic illnesses sometimes need isn't another assessment.

Perhaps we need someone to connect the assessments we already have.

• Medicine may ask: What is wrong with your hands?
• Functional assessment may ask: What can your hands do?
• The workplace may ask: Can you perform these duties?
• Insurance may ask: Do you satisfy this definition?

Building a life with limited function

But the question I live with is bigger:

How do I build a safe, sustainable and dignified life with the function I actually have left?

That question seems to belong to all of them.

And sometimes, somehow, it belongs to none of them.