Finding the Right Medical Support

I am 74. I have had asthma since I was 65. It took several years to have this type of asthma identified and treated. This means that those first few years were fraught. I was told it was just "anxiety". I had one GP tell me that I needed to start taking Valium. I had one pulmonologist yell at me and tell me to exercise everyday and to lose weight.

Dealing with mistreatment from asthma doctors

I spent many times in tears at how I had been treated, particularly by one nurse and quite a few doctors. It is dreadful to have to be on the receiving end of this sort of arrogance. At my age I decided that I couldn't let this abuse pass, so I would stand up for myself from now on and this is what I did.

Ways I advocated for asthma management support

Kept a personal health record

I prepared a page on my asthma history. This went into my medical book that went to the hospital and all medical appointments. In this, I included the difference between asthma and anxiety.

Changed my care team

I changed specialists. I changed GPs. I will not put up with someone who belittles me. I now have an excellent support team.

Attended a pulmonary support program

This was excellent as I learned so much. Why I coughed after eating, why talking could be so difficult, why it was so important to pace my exercise, how to recognise the optimum exercise levels and to not exceed these, how each medication worked, chronic illness and depression etc. All of these things were delivered by health professionals, including speech therapists, exercise physiologists, psychologists, pharmacists, medical scientists, dietitians, and more. There was no way I could have learned all of this on my own nor had access to this expertise.

Reported prior mistreatment

I took action to report mistreatment in a hospital and by one doctor. I didn't get very far with this, as I was a minion against a big system. But it made me feel worthwhile as I had a say.

Received an accurate diagnosis

The pulmonary rehab scientist referred me to the top lung specialist in my state. This was the fifth year of having asthma and averaging 8 hospitalisations each year. This was affirming. It wasn't anxiety! It was severe neutrophilic asthma! Wow! I had a name for this and a treatment regime.

Chose a hospital that knows me and my condition

Whenever possible I go to the same hospital for emergencies. They know me now and they recognise my sort of asthma. Four weeks ago in the emergency department, I got "oh, I've seen you before. I know your asthma. You will need to stay a few hours and if it happens again within that time, well, you be admitted". Well, I was admitted and I stayed for 3 days. They knew me and my asthma almost as well as I do.

Navigating challenges with the right asthma management support

So it's been a very long journey.

Now my asthma has changed again! I now have developed allergic asthma as well. I am on another learning curve and am back struggling to manage flare-ups. The difference is that I already have a great support team in place and they won't tell me it's "just anxiety".