How do you advocate for your own health?

For most of us these days if we or a family member is diagnosed with a health condition it is up to us to educate ourselves as best we can. If you are unlucky, your doctor may sneer at you about resorting to Doctor Google. Most likely you are going to have to be your own advocate in order to get the health care you need so I personally think being well informed is a great first step.

When you are well informed, you are empowered rather than frightened, it helps you to have realistic expectations about what can be done, and it can make illness be a less frightening and isolating experience. A bit of knowledge also helps you ask the right questions when you do get to see the specialist and it helps you get better value for money if you know what to ask and what is available to you before you go in.

Do not let any health professional treat you like you’re silly for not understanding or for asking questions. It may be something they’ve seen so many times that it’s old hat, but to you it might be new, or maybe the standard treatment isn’t working for you. From the health professional’s perspective, surely it would be better to have patients who understand what is going on, what their medication is supposed to do, what they are not supposed to do while on that medication, and what can be reasonably expected to happen during the course of treatment.

If you’ve been diagnosed with a health condition a good first move is to listen to your doctor. Follow their suggestions, at least initially. If you have doubts seek a second opinion from another doctor. If you feel like there is not enough time to go through all of your concerns, book a double appointment before you go in. Ask the doctor if there’s an organisation that they would recommend that can offer you further support, for example Diabetes Australia if you’ve just been diagnosed as a diabetic. Quite often there will be pamphlets on hand or in the waiting room that will direct you.

Have a look at relevant government health websites and see what is recommended there by way of support services and treatment options, even if you don’t especially trust the government. You need to find out what is readily available to help you in your area, and what your doctors are likely to be recommending to you. There is no point doing lots of research and finding wonderful things that are available in another country if it hasn’t been approved for use for that condition where you are. Your doctor is going to start on whatever the standard treatment options are and work from there. I don’t want you to feel as though you’ve been dismissed by your primary care health professionals when you go in with your heart set on a particular thing and they haven’t heard of it or if they don’t have time to go into the research when the standard treatments haven’t been exhausted yet. If you find a decent selection of research papers that recommend a certain thing that you would like to try, print them out and take them in. Be as thorough as you can. Your doctor will not take action on just one study. At best they will say “that’s interesting” but if they don’t know anything about it and they feel like the data is insubstantial you are not going to get the outcome that you want. Doctors have professional bodies that they have to answer to as well and they will not go off script without very good reason. It may be that they can refer to you someone else who is better placed to help you, so don’t just not say anything if you have particular options in mind. There may be scientific research studies being done that you could be got into. It might be time to go and see a naturopath (If you’re here and reading this I presume that you have at least a passing interest in natural medicine)

Once you’ve seen your doctor, you may possibly go looking further afield online. It is important to still restrict yourself to the experts at this stage. Investigate the qualifications of the person presenting the information. Is it appropriate and relevant to what they’re talking about? Are you watching a video about vaccines from a virologist or a hairdresser? An epidemiologist or a wellness coach? Do they have experience in the field? Are they members of associations? Are they well regarded in their field? What other things have they had published? This critical way of evaluating professional opinions online doesn’t mean you can only consume the content of doctors and academics. There are many massively qualified naturopaths and nutritionists out there who are doing very exciting things in the world of research. (Yours truly can hold her own in most company, being the proud owner of several extra letters after her name, but there’s also naturopaths who have masters degrees, PhDs and are on government boards around the country advocating for better health care.) The qualifications of alternative and complimentary health practitioners are definitely worth scrutinising.

Importantly, someone who is qualified is never shy about listing what their qualifications are. If you don’t see qualifications listed or they become evasive when asked, get out of there.

I think it is also valuable therapeutically to find your peers, the people who are also experiencing the same issues you are. They will help you find what is best to read and which doctors or naturopaths have been helpful. Solidarity and shared experience is so valuable, especially when it’s all new to you and you might not know anyone with the same condition. It will help you to establish what life is going to look like day to day and help you figure out from watching them what adjustments might be necessary in your own life so you can take preemptive action. The experiences of others can save you from having to figure out how to reinvent the wheel yourself, potentially sparing you some distress.

Most commonly these days people do this via a Facebook group. If you go to Facebook groups for support it’s important to establish a few things:

  1. Who is running this group? What are their qualifications? Sometimes they won’t be qualified at all, it might just be a fellow sufferer, which is not inherently a bad thing, but this will be a group to share resources and experiences, not to take health advice
  2. How attentive are the moderators? Is there a code of conduct? Is this a public or private group? This is important for establishing whether this is a safe space for you. Is this a place where people are vulnerable and lean on each other a lot? Is that something you want to get involved in or do you not have any energy left over to support others? Most Facebook groups will have people who just are members but do not post. It is usually perfectly acceptable for you to be one of them too. Just remember when you’re in one, what you post is visible to all members of the group, so be careful of how much personal information you share. A well run group will have a moderator that will gently encourage people to be mindful of over-sharing or to be kind to one another as needed. Do not take it personally if this happens to you. They are trying to look out for everyone in the group and the internet can be a zoo, especially when there’s vulnerable or distressed people involved.
  3. Do you feel empowered or connected, or foolish and judged? If you feel anywhere online negatively impacts your self esteem, get out of there. (Note: this is very different from having your beliefs challenged, everyone should experience that every now and again. This is how we grow.)
  4. You may need to manage how much time you spend in these groups. I spoke to someone with a rare heart condition about this. They have absolutely found Facebook groups to be very helpful. That particular group is run by the Mayo Clinic in the US and fairly often has doctors doing live videos to discuss the latest research, which is fantastic, even though those breakthroughs are years away from being available here (this person has time). Fantastic advice that my client was given, that I will now pass onto you is to only go into that group when you have questions. Don’t make your life about your chronic health condition. Live as normally as you can.

My mother is currently undergoing treatment for a rare (not usually fatal) form of cancer. She’s in a couple of Facebook groups that she found by googling her condition. I’ve just spoken to her about her experience of being in those groups. There’s one that’s based in the US but accepts members from all over the world that exclusively has people with the disease making posts, and there’s one that’s an Australian group that has both patients and medical staff (such as oncology nurses) making posts and taking part in the comments. She has found them very helpful leading up to her surgery in learning what to expect from other people’s experiences. For example, she thought the recommended aftercare from her surgeon was a bit mild, and then learnt from the group that was exactly what was necessary from the people who had already gone through it.

Since she’s had the surgery and has been to see the oncologist for a follow up she doesn’t feel the need to go in the group so much, and absolutely agrees with my client above: only go in when you have questions. She felt like the was being brought down and stressed out by the people in the groups who were more doom and gloom, and found the details that were shared about genetic testing results too much.

So I hope this has helped you. I tend to attract naturopathy clients who have had issues for 10+ years that no-one’s been able to sort out yet and as a group they are very switched on people. They learnt the hard way how arduous advocating for your own health can be, so I hope that if you’re more new to this what I have written will be helpful for you. One of the beautiful things about being a naturopath is that we get to spend time with our clients going over what all the concerns are and making sure they understand what is going on.

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