You would be a rare and lucky specimen if you had never been exposed to life threatening illness. For example, cancer. According to Cancer Research UK,
One in two people born after 1960 in the UK will be diagnosed with some form of cancer during their lifetime.
I have seen the devastation of cancer on loved ones. Multiple times. Illness has a way of leaving you powerless and reminding you that you are a tiny speck in the universe, doesn’t it? What can you do, and how can you have choices in a time of medical need?
In her piece for the New York Times, “Angelina Jolie Pitt: Diary of a Surgery”, part of a series, Mrs Jolie Pitt shares her struggles with cancer and reasons for undergoing life-changing preventive surgeries: a double mastectomy and the removal of her ovaries and fallopian tubes. I was keen to read this peice and I am beyond thankful to her for sharing her story so candidly. I deeply respect her brave decisions, and the fact that she has faced very difficult situations head on.
In the latest article, Mrs Jolie Pitt states her aim:
I wanted other women at risk to know about the options.
However, the whole time this particular story has had me thinking about (obssessing more like!) my own experiences with the health system, and the level of support you can expect, even with private insurance. When it comes to illness, who even gets a chance to know of, and consider their options? Who even has options to choose from?
I have concluded that, without taking away from its immense worth, this story represents the experience and opinions of an elite, someone who has had the chance to do regular proactive check ups and whom, in her time of need, had the best support system there for her: family, friends, work flexibility, no financial concerns, access to the best health care and the ability to hire aid. In fact I beleive, from reading the other articles in the series, that to some level she is aware of this.
Today I wanted to reflect on what I have learned from Mrs Jolie Pitt coming forward with her story, and think of practical ways for the non-elite to have access to, and make decisions in times of need. I fear this may be a mamoth task… in fact I have spent considerably longer on this post than I would have liked to, hence my being unable to keep to my regular schedule. (And yes, I now fully understand the worth of an editorial calendar and am putting one in place! 🙂 )
So, here goes.
Thinking about myself, I would have family support, friends, I could negotiate work flexibility (so long as I can ensure that the work gets done). I would not be in a good position for best health care access, even though I get private access through work (which I am very lucky to have). It would be good, but it does not compare. The best are for those who pay the fee as and when, I guess, without restriction to the service and can afford to get multiple first class recommendations quickly enough to make a real choice. Finally, I could not afford aid and even with insurance, the financial burden of the entire thing would have a severe impact.
Realistically, someone like me would more likely discover their illness on or past the early stages, when there are obvious signs. It may not be too late, but the simple fact is that I would most likely not have the opportunity to act preventively, as Mrs Jolie Pitt did. Preventive choices are a luxury – but should they be? I keep thinking that when I earn more, when I’ve paid this or that off, then I can pay for yearly full health checks. These are expensive, and we tend to assume that they are akin to a gym or spa membership. Good if you have extra money. So much so that I know very very few people who do these. I know people who go to the gym to stay healthy. A few others who have extra cash prefer to get a spa membership to live a better lifestyle, which may or may not increase your general health. Thinking about this relatively, I’d say the health check would give you the most opportunity for choices, and it is without a doubt worth doing. Imagine yourself saying you don’t need an insurance? Didn’t think so. Why are we only focusing on if the worst happens? Why not do more to prevent it?
Someone in a worse situation may see symptoms and put up with them until they are forced to face them. Believe it or not, you simply get used to things, you learn to tolerate pain, you put up with more than you ever should. You do this because you have to keep working without flexibility to bring food to the table, you have to pay rent / your mortgage, you do not have help, you may have even seen a doctor and received an unhelpful response. You may not have been offered any options, or seen in a timely manner. Even in the UK with the NHS it is obvious that the process to get appointments is overly lengthy and the appointment times and dates available can be a deterrent.
It is actually not obvious that any one of us would go to a doctor fast enough when we see symptoms. Denial is a real issue too. Thinking that there is time is a real killer, because you have no time at all, and understanding your potential options and choosing should take all of the time that you do have.
“The most important thing is to learn about the options and choose what is right for you personally.”
Agreed. Mrs Jolie Pitt states that she received opinions from Western and Eastern doctors. Here is her timeline on the latest article: TWO WEEKS, from blood test results, to the article. Two weeks. She receives the blood test results, same day her husband is able to fly back from accross the planet and she sees her most trusted doctor (not many have a trusted lifelong doctor). Within a week she had received all the necessary results, further opinions, and underwent the procedure. A week after that she is well enough / in a good enough state of mind to publish this article.
I have never yet had a life-threatning illness, but I have had issues which have seriously impacted my life. I remember it like it was yesterday, the day I first felt the striking pain of acute plantar fasciitis in my right foot in mid November 2006. With a quick diagnosis, and had I been able to understand my options, I may not have had to endure it still (constantly) in 2015, in both feet since 2007 due to the stress. I went to the doctor immediately. The pain was atrocious. You would think that something that debilitating would command a quick diagnosis. I was healthy and active, then suddenly I can no longer walk, any contact with my feet/ pressure inflicting pain. Guess how long it took for a diagnosis? 1 Year. Yes. 1 Year. F*ck. Ahem. –
9 years of my life impacted.
Because I did not know of and have the right options to get treatment and do re-education then and there. Chronic pain is a patient killer, slowly reducing the quality of your life and the state of your overall health, both physical and mental. I am still fighting to be seen for newer treatments on this. I’ll gladly share my struggles in a seperate post.
Ok, it is not cancer. I fully agree. But still, if such a simple diagnosis is subject to quite this margin of error, I am afraid.
So I have given some real thought to the measures we can all take to increase our chances of success. Success comes with having informed options to chose from with what concerns our health.
Here are my personal recommendations –
11 things you can do to ensure you have choices in a time of medical need:
Good news – there are many ways to tackle any seemingly impossible issue. I’m not saying all illnesses can be cured, and this list is entirely my opinion (I am not a medical professional) and how I address my options, but I hope it will help you too.
1. Understand that you have a right to, are encouraged to and should actively seek preventive medical advice.
To the core the medical profession seeks to proactively prevent medical issues, rather than try to fix you once you’re showing symptoms. One method is significantly easier than the other, and preventive medicine is much more cost effective for all of us. We all need to be engaged in our care and seek advice.
2. Practice self-help by looking into your family history and health trends
Speak with your relatives, loved ones and friends, depending on your level of comfort discussing your concerns. It is important for you to understand what your blood relatives have had to face so that you will at least know what you are most likely to need to look out for.
3. Check if you have access to free health checks
Even if they are limited – check. In the UK it is easy to check on the NHS website. The NHS offer free health checks depending on your age. However, if you do not get a free health check really consider your priorities and your personal levels of risk – Mrs Jolie Pitt knew she was at risk and made her health checks a priority. This is a choice you have to make. Yearly health checks couldn’t be a waste of money, but if doing them will put a high strain on you financially there are other options.
4. Go to a wellness kiosk, or a local free clinic and ask for specific advice
Ask about your sexual health, cancer, pain management, weight management, and any other query requiring expert advice.
5. It’s always free to ask your Pharmacist for advice
Your local pharmacist is trained to provide advice on a great variety of topics. Otherwise, contact a local Nurse (In the UK you can call 111), or your GP for general advice.
6. There are official online self-check guides you can follow to understand your risks and options
Take these with a pinch of salt as they are subjective and you may be influencing your own thoughts towards the negative…
7. Don’t go preventively checking symptoms online
It’s enough for anyone to become a hypochondriac, as every sensation is listed as a symptom and associated with some horrible disease.
8. Try reaching out to health communities.
I particularly like the WebMD communities, which is active and provides a good mix of expert input and well meaning respondents. There’s no excuse such as feeling embarrassed or not knowing where to turn when you have the option of freely talking about your concerns.
9. Try websites such as Ask-a-Doctor
I have used this website in a pinch and has proven very helpful to me. It costs a little money but not much, and it is a great way to get more expert opinions for example, or get impartial advice: the online doctor can’t be motivated by drugs sales, only by the commission they get for fully answering your question – to your satisfaction!
10. Understand your rights and the processes that you may have to go through in case there is a real issue.
Sounds simple enough, but many of us have no idea how our health care system works, and what support we can expect. Understanding this fully will enable you to understand exactly what you can do if you need it. For example, which doctor will you go to? Where? How soon will you be seen? If you need surgery / treatment, what are the cost guidelines?
11. Evaluate your own coping mechanisms, realistically, and decide what should be done as a guideline in a time of need.
It will save you a lot of time and unnecessary anxiety. For example: What is your tolerance – at what point do you go to the doctor (don’t compromise on your health)? How do you usually cope when you get ill (flu is a good example) – do you feel emotionally miserable or do you usually remain positive? What helps you cope? What would you do if you couldn’t walk? How would you pay for any medical bills? Understand how you would cope!
Whatever you do, if you have health concerns don’t ignore them, the solution might be simple. Ignoring issues won’t make them go away…The quicker you squash your health fears, the better you get to enjoy your life.
It is so, so important to think about things like this and know what to do. When I think back on Mrs Jolie Pitt’s story, I think that what helped her are, yes, her fortunate circumstances, but even more importantly her active and engaged stance to her health. The good news is that this is something we can all do.
Another thing to remember: you are not alone. Somewhere in this world others are going through similar struggles and concerns. We can help each other.
Lastly – remember to live your life and enjoy every minute. Don’t waste precious time wondering what will happen. Being afraid of illness is like being scared of shadows, there is no sense in either running away, or trying to see through them.