You can disagree with your Dr, its called self advocating.

Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life.

How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider.

In the UK when it comes to healthcare traditionally we are not very good at speaking up for ourselves. We often go with what the Dr or Nurse says because they have done the training and what they know is best. This is a very antiquated view now I think yet we still want to please our Dr’s so will do what they say and take what the prescribe. We often think if we don’t do this we are seen as a difficult patient and no one wants to be a difficult patient do they!

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Speaking up for yourself can be daunting, I remember thinking I can’t question a Dr, they went to medical school for 6 years and have done countless more years honing their skills in whatever speciality they chose so who am I to question them. I only live with the condition I don’t (or didnt) know the physiology behind my diseases or the best treatments for them. This is what the Dr’s know.

I wish 14 years ago I knew what I know now. I have written about this before but 14 years ago my Drs had me on prednisilone (which frustratingly I am still on) and kept weaning it down as they did not want me on it long term. I didnt understand the long term side effects of prednisilone at the time but was getting fed up of feeling good while on higher doses of pred but then start feeling awful as the dose reduced and came off it. It was like a constant rollercoaster. My answer to this was just not to take the pred. I didnt feel good not taking it but at least I was not feeling great to then have that feeling taken away and I would go back to my life being put on hold. I found that I preferred to know where I was with my lungs and adapt to life where my lungs were not that great. This did not work out well for me on several fronts:

  • My health was awful, I couldn’t do anything, I was missing out on life, friends, sport, uni.
  • My mental health was at an all time low because I couldn’t do anything with my friends and just be a normal student, but I could not cope with being able to do things with my friends while on a high dose of pred for it to then be taken away again.
  • I was lying to my medical team, how could they trust me if I was not doing what they wanted me to do.

It all changed when I managed to get a chest infection and put off going to the Dr. I ended up in intensive care really poorly. I was questioned by my consultant about why I waited a long time to get seen and go to hospital and why did I not put up my prednisilone according to my care plan when my peak flow dropped.

It was then that I opened up to the Dr and said what I had been doing and why. I explained that I didnt like knowing that while on a high dose I would feel well and be able to do stuff and then the dose would be reduced and I would not be able to things because of my chest so would prefer to just not know what it was like as it was a false sense of reality that was just then taken away.

Once I recovered from that hospital admission I had a meeting with my consultant and asthma nurse to have a frank discussion about my asthma, asthma care, medication regime and care plan. This was the first time I felt that it was ok to speak up and say to them what was important to me in life and what I wanted to be able to do etc. It was great as we were able to work out a lot of things and while I had to make compromises as it is not possible to do everything I wanted to be able to do but now my consultant really understood me as a person and our working relationship grew because I was able to be honest. I was also able to bring suggestions to him about new medications I had heard about. It became a 2 way conversation which I have now always made sure I have with all my Drs and nurses involved in my care.

It can be daunting at first to advocate for yourself but I can assure you it is the best thing you can do. Drs know conditions and medications but they don’t know you and your life unless you speak to them about it. We didnt choose to develop chronic health conditions but we do choose the life we want to lead and this includes how we manage our health, what medications we are prepared to tolerate and what we are not. Some side effects may be ok for some to put up with but not others depending on life situations. For me just now I don’t mind my dose of prednisilone changing quite a lot because I am not working (I find that when the dose changes my insomnia is so much worse) but if I was working then I would speak to my Dr about not having the dose fluctuate so often so I could try and manage my insomnia better.

Self advocating is not about arguing to get your own way but it is allowing your medical team to work with you to get the best management plan for your condition and your life. If you as a patient are involved in the decisions about your care and agree with them then it is highly likely you will be a more compliant patient with medication compared to a patient being told what to do and what to take when who is less likely to comply because it is not what they want to do or it does not fit in with their life. No one likes being told what to do but if we are involved we are more likely to follow instruction.

It is important to remember that while self advocating is good, not everyone feels comfortable doing it and would prefer to just do as the medical professionals say. That is fine too.

I am so glad that I was able to learn that my voice as a patient is just as important. I do have knowledge, I am an expert patient in my own health and my conditions. I am allowed to bring my thoughts to the table when Im in appointments as I need to try and get the best management for my health possible.

I will leave it here but I would say self advocating does not make you a difficult patient, it makes you a patient that cares about their health. This is why I self advocate and why I am also a wider health advocate and will advocate for various health conditions like severe asthma and allergies.

What do you do when you have a bad or good travelling experience when you have a disability?

I have been very lucky that despite my asthma I have been able to travel (mainly to attend conferences). I have travelled via a variety of different methods: train, plane and taxis.

Thanks to the hidden disability lanyard I have been very fortunate in the treatment I have received in airports. I have also been able to use it on trains but now that I am walking with a stick I have noticed people come up to me more to offer help or get up from seats and give me theirs.

I decided to write this blog after some time to think as at the time I was angry, humiliated and really not thinking in a constructive manner. I am now thinking about how to change this negative experience I had into a positive one.

In September I went to Madrid to attend the European Respiratory Society Congress. The travel out was spot on. Arriving at the airport I had my sunflower lanyard on and was helped with my bags at check in and offered the use of a wheelchair to get me up and through security. I declined as I knew I would be seated for a large portion of the day so wanted to take the opportunity to get some walking done.

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The one point that most people dread when going through the airport is security. I know I do. Having a hidden and visible disability and wearing my sunflower lanyard I went up to the special assistance gate at security. An officer asked me if I needed some help. I accepted and she helped me take my laptop and then medical supplies and put them in the trays. She then escorted me to the bit where you walk through the scanner. She explained that they needed to put stick through the X-ray but they had a wooden stick for me to use while I got through the scanner myself. Due to my inability to walk without my shoes and splint on, they made other arrangements and swabbed my shoes, provided a chair for me to sit on while they did this and also stayed with me to help me put everything back in my bag and make sure I was ok.

Boarding the plane was the next challenge. All sorts of thoughts were running through my head. Dreading the thought that we might have to go on a bus to get to the plane and then climb up stairs to get into the plane. I was able to ask at the gate what the boarding situation would be. I was then asked to take a seat behind the gate where I was introduced to the crew and then told I would board the plane when the crew went on too.

It was all so seamless and almost had that too good to be true feeling. It was really refreshing to have such good service in what can be quite a stressful time. I have sent a compliment form into the the airport and BA who were the airline I was flying with.

On the way back the airport experience was polar opposite until I reached the gate to board the plane.

Arriving at security I once again had my sunflower lanyard on and went to the special assistance area for security. This is where I can only say I felt humiliated and felt like totally breaking down. No help was offered at all. I did asked for some help but this fell on deaf ears. The area was not particularly busy so I was shocked that my request was turned down. I sorted all my stuff and got my medication and medical devices out my bag and into a tray, pushed them up the line till they went through the X-ray. I then went to walk through the scanner and was greeted by a security officer who spoke good english and told I couldn’t take my stick through or wear my shoes or my splint. I asked if I could wait and they could go through then if I could be given them back so I could walk through. I was told no and then my hands were taken and I was just about dragged through the scanner, almost falling flat on my face. I was tripping over my foot as I cant move it myself and have no feeling below my knee. I was crying inside just wanting the ground to swallow me up, hating myself that as a young person I was being humiliated in such a way. I kept thinking I should be able to walk normally, I shouldn’t be in this situation. Once I had been dragged through the scanner, my hands were dropped and I was left to try and get myself to the trays with my stuff in and get myself sorted.

I managed to get myself sorted without totally breaking down. On the way out of security there was one of those things that has buttons asking me what my experience was like. I obviously pressed the button with the red sad face. A man then came an asked me why I pressed it. I gave a brief description of what happened and the man just nodded me. No offer of apology or anything.

I just pulled myself together and then joined the others I was travelling with, putting the experience behind me so no one would know just how upset I felt inside.

The rest of the travel home was seamless. I travelled home with Easyjet and once again the staff were very helpful. Unfortunately the seat I was in was considered an emergency exit but they found me another seat which was actually a whole row so I could put my leg up.

After all of it I was so glad to get home and back in my own environment.

One thing I have learnt and looking back I would have done things differently. While in security at Madrid airport I would have advocated for myself. I would have stood my ground and made sure my needs were met rather than be humiliated as I was. I wish at the time I had been able to stand up for myself but I was caught by surprise so I guess I was really shocked. You don’t expect it.

In future I will be prepared. I will have a written explanation of why I need the stick, that I cant walk without it or without my splint, and also what my medical conditions are. I will have this all written in the language of where I am going to. I will also use other communication cards in the language of the country I am going to. I want to be prepared and I don’t want to go through this experience again. I also don’t want others to have this experience as it really destroyed me, my confidence in travelling solo with no support has dwindled. I should be able to travel Im a young person who wants to experience life not be humiliated and shamed into not wanting to travel only own again.

If anything can come from this experience it is that I have learnt more to advocate for myself and also use my situation to prevent others having similar experiences.