Self-Advocacy
Advocating for oneself in health issues can be very important for ensuring you receive the best possible care, but first:-
What is ‘advocating’?
It's being able to speak up for yourself rather than relying on others – having the confidence to say or do something when you don't think something is right, or when something needs reviewing, or changing. Sometimes this is called self-advocacy and when it comes to our health that can really be important!
Have a goal!
What do you want to achieve?
This could be something as simple as ‘understanding what is said to you’, or to ‘get a referral to a specialist’. Or, more complicated such as ‘a change to medication’ or ‘get an explanation on a report’. Be realistic in your choice. It helps to decide your goal or target before you tackle self-advocating.
Sometimes it is better or easier to have a close friend, carer, or relative advocate for us, we may be ill or too weak or disabled to be able to self-advocate in which case perhaps suggest they read this post or share the information with them to help both of you advocate successfully.
Being disabled or ill with a condition can mean we feel very vulnerable and unable to support ourselves effectively in what can seem to be a very stressful situation like a doctor appointment. That is when preparation can be key to feeling like we have achieved the best.
Sometimes we may lack the confidence we need to make the best decisions and that is when learning as much as we can about our disability, condition, or mental health issues really can reap benefits.
Here are some strategies to help you effectively advocate for yourself:
1. Educate Yourself
Understand Your Condition: Research your health condition thoroughly. Use reputable sources such as medical journals, trusted health websites (like Mayo Clinic or WebMD), and patient advocacy groups.
Know Your Medications: Learn about the medications you're prescribed, including side effects, interactions, and the reason for taking them.
2. Communicate Clearly
Be Honest and Open: Clearly describe your symptoms, concerns, and how you're feeling. Don't downplay or exaggerate your condition.
Ask Questions: If you don't understand something, ask your healthcare provider to explain it in simpler terms. Questions like "Can you explain that again?" or "What does that mean?" can be very helpful.
3. Be Organized
Keep Records: Maintain a detailed health journal with your symptoms, medications, and any changes in your condition. Bring this journal to your appointments.
Prepare for Appointments: Make a list of questions and concerns before each visit. Prioritize the most important issues to ensure they get addressed.
Take Notes: During the appointment ask if you can take notes so that you remember clearly what is said, or ask a friend or family member to come with you to do this so you can concentrate on what is said and carefully choose a reply.
4. Build a Support Network
Bring an Advocate: Consider bringing a trusted friend or family member to appointments to help you remember information and provide emotional support.
Join Support Groups: Connect with others who have the same condition. They can provide valuable insights and support.
5. Know Your Rights
Patient Rights: Familiarize yourself with your rights as a patient. This includes the right to informed consent, the right to access your medical records, and the right to a second opinion. (not applicable to all countries so please check yours!)
Insurance and Coverage: Understand your health insurance policy, what it covers, and your rights regarding appeals and grievances. If you are in a country that does not routinely need health insurance then look at the applicable information such as ‘PALS’ in the UK,
Research your Doctor: hospital, or clinic. Know what they can and can’t do for you. Look at their website and read all the information there to familiarize yourself with their stance.
6. Be Assertive, Not Aggressive
Advocate Assertively: Assert your needs respectfully. Use “I” statements like “I need more information about...” or “I’m concerned about...” to communicate without seeming confrontational.
Be Polite: use please and thank-you when needed.
Set Boundaries: If a healthcare provider is dismissive or not listening, it’s okay to seek a second opinion or switch providers.
7. Utilize Resources
Patient Advocates: Many hospitals have patient advocates who can help you navigate the healthcare system.
Online Resources: Use online tools and resources for additional support, such as telemedicine services or patient advocacy organizations.
8. Follow Up
Clarify Instructions: Before leaving an appointment, make sure you understand the next steps, including any follow-up appointments, tests, or treatments.
Monitor Progress: Keep track of your progress and any changes in your condition, and report these to your healthcare provider. Use that journal to keep notes of pain or mobility and your condition.
9. Self-Care and Mental Health
Take Care of Yourself: Maintain a healthy lifestyle, manage stress, and seek mental health support if needed.
Mindfulness and Relaxation: Techniques such as mindfulness, meditation, and relaxation exercises can help manage anxiety related to health issues.
Conclusion
Advocating for yourself in health matters involves being informed, organized, and assertive while maintaining respectful communication with healthcare providers. By taking these steps, you can play an active role in your healthcare and improve your overall well-being.
But. . it isn’t always easy, in fact it can be quite challenging at first. It also takes a strong will to advocate and when we are facing a health problem that can be the last thing that we want to face.
Thoughts For You:
✅ Please share with us your experiences of self-advocacy.
❔Have you tried it, how did it work out?
💡 What tips can you share to help others have a better experience, please share them here.
💭 Might you try this approach in the future?
For anyone interested in being Interviewed about their disability or condition, there is a form https://forms.gle/MZ1df1FWtJYHQvuy9 to express your interest in being interviewed as well as volunteering to interview someone else, or just pm me!
Catch up with other Interviews Here in our Master List!
Want to join the Disability Support Community Team? Find out more Here
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@MistyMagic
Ello :3 Thank you for this post. I've been trying to journal everyday and this gives me the opportunity to do so.
I struggle with self-advocacy. Since I was very little, I had no voice or control of my life. I'm trying to find more confidence to say and do things more often.
Here is my self-advocacy plan:
What goal do I want to achieve? To get back on a medication I used to use that really helped me.
How can I educate myself? Understand how my medications interact with each other and figure out when each should be taken.
Communication & questions: Telling my doctor how I've been responding to each medication and adjusting it more often.
Be brave: I will reach out to my health care provider about concerns.
Research and be prepared: I will research how to better function in society with my condition.
Drink enough water: I have a water chart that I haven't been using. I need to start using it, I feel better when I am hydrated.
Thoughts For Me:
✅ Please share with us your experiences of self-advocacy.
❔Have you tried it, how did it work out?
I haven't tried it yet but hope to do so this upcoming week.
💡 What tips can you share to help others have a better experience, please share them here.
Don't be scared to ask for a dosage increase. If your medication isn't working as effectively as they used to, you deserve to get the right dosage.
💭 Might you try this approach in the future?
Yes! In the past I was too worried to share things with my doctor because I didn't want them to make assumptions about me. Breaking that barrier is important for me.
@LittleEggHarbor ello back!
Thanks for replying so well, you make some good points. I wish you well and hope to hear more of how you get on and strive to self advocate.
@LittleEggHarbor. I hope it goes well for you.
@MistyMagic Experiences with advocacy. I’ve been trying to figure out how to do this with an illness that many doctors disbelieve or believe is a psychological condition. I’ve had years of eye rolls when I mentioned me/CFS and dysautomia and wasn’t sure how to react. I have another heart condition and was trying to explain me/CFS to the cardiologist when he started screaming at me “there is no such thing” “You need to work more” I froze in the moment but I never went back to that doctor.
@adventurousBranch3786 thank you for sharing that with us. I think wherever there are multiple conditions the difficult can be multiplied! I know how hard it can be to push and advocate for ourselves and taking information with you can be really helpful.
ME/CFS has so many difficult sides to it, for instance being an invisible illness seems to be one of the main things that so many people bring up, and I agree. It goes far beyond just being tired doesn't it!
I'm going to link this article about living with ME/CFS so that others will understand more
https://www.7cups.com/forum/disabilities/DisabilityDiary_2664/InterviewLivingwithCFS_328938/
@adventurousBranch3786 hugs you tightly ❤❤
@Tinywhisper11. Thanks for the hugs, hugs back ❤️.
@adventurousBranch3786 it's really upsetting to hear your struggles 😞 I wish things were easier for you ❤
@Tinywhisper11. No worries I feel a lot stronger coming here and meeting others with disabilities. Hearing about their struggles (and yours) makes me feel less alone.
@MistyMagic
Thank you for such a relevant, useful, and well-written article!
Unfortunately in most countries (and certainly in mine), we have to learn to stand for our rights, because the healthcare system hides and denies them. We might also be denied our rights in our workplace and even be stigmatized in our family and social circle.
Self-advocacy, standing effectively for our rights (or the rights of people close to us, my parents in my case), takes a lot of research, almost detective and lawyer work, as well as learning scientifically about the health issues involved. And then confronting in an articulate and skillful way the institutions and the people with the power to provide what is rightfully ours.
Your article is a great guide and checklist about how to proceed in this regard.
I wish everybody had access to this guidance.
I suspect that most people are clueless. There is a cruel paradox: the people who need help the most are the less able to get it.
Self-advocacy is crucial for getting the best quality of life attainable for each of us, and being respected for our rights and value as human beings. Sometimes it might even decide a life or death matter. It's a tragedy that many people who badly need it are unaware or incapable of doing it.
I hope many people in Cups read your article, and also spread this knowledge in their families, their social circles and their communities.
Thank you again for yet another great contribution!
@HealingTalk hugs you tightly ❤
Tight hug, Lola! 💜
@Tinywhisper11
@HealingTalk Thank you for your kind words.
I liked that you highlighted this part "takes a lot of research, almost detective and lawyer work, as well as learning scientifically about the health issues involved." Yes absolutely, I have researched so much and sometimes it can lead to a rabbit hole of information, is too much, too much I wonder? Perhaps sometimes it is.
Of course there has to be an element of trust and there are situations when we just need to calm and go with the flow of whatever is given to us. But I do hope that my post stimulates people to think and that here at Disability Community of 7 Cups we can help :)
Yes, absolutely, your post sheds light on a very important aspect of living with a health issue, that is not often considered when discussing this topic.
And yes, the community can help! For example, I have seen many member-member (also listener-member) posts sharing information and resources to help them advocate for their rights and dignity. And your thread is a superb contribution, of course.
Thank you for raising this issue, and congratulations on your very useful and informative post!
@MistyMagic
@HealingTalk. Your parents are fortunate to have someone like you who is articulate and skillful to advocate for them.
Thank you, Branch!
You are always so kind!
Sending you much love and appreciation! 💜 💜 💜
@adventurousBranch3786
@MistyMagic
To be honest the pressure of self advocacy has hurt my life in so many ways, I've totally lost myself. My environment, living in a gaslighting situation, being suppressed and emotionally neglected all my life has made me really unclear about boundaries, I only learned about them 7 years ago. With my sensitive brain and soul, it's going to take some time and patience to build self advocacy. And sometimes the progress gets lost with new stressful situation. The pressure of self advocacy is hurting me, so I'm learning to be self compassionate and let myself grow in a gentle pace.
But still this article will be helpful for me I think, I've skimmed some points.
Thank you <3
@floatingLeaf4973 Thank you for sharing, I do understand and you are not alone, many others will feel like you, and of course skimming is fine. I sometimes feel that if we read things they do go into our memory and who knows but the information my be useful some time. Sending you lots of good wishes"
@MistyMagic
By writing "This article will be helpful for me I think", I meant I saved it for later read.
@MistyMagic
✅ Please share with us your experiences of self-advocacy.
❔Have you tried it, how did it work out?
In my personal life, I've had to advocate for my needs in relationships. For instance, when I felt overwhelmed with responsibilities, I expressed my feelings and asked for more support from my partner. This honest communication led to a more balanced division of tasks and strengthened our relationship. Though initially difficult to initiate, it effectively created a healthier and more supportive dynamic.
💡 What tips can you share to help others have a better experience, please share them here.
💭 Might you try this approach in the future?
- Prepare Thoroughly: Reflect on your needs and how to articulate them clearly.
- Stay Calm and Respectful: Approach conversations with a positive attitude and without blame.
- Be Clear and Specific: Specify what you need and why it matters to you.
- Listen Actively: Be open to your partner's perspective and willing to find mutual solutions.
- Follow Up: Check in regularly to ensure the changes are effective and sustainable.
I will definitely continue using this approach in the future. It fosters open communication, mutual respect, and ensures that both parties' needs are met, leading to stronger and more fulfilling relationships.
@wishfulForest1871
I love these, thank you for sharing your experience too.
- Prepare Thoroughly: Reflect on your needs and how to articulate them clearly.
- Stay Calm and Respectful: Approach conversations with a positive attitude and without blame.
- Be Clear and Specific: Specify what you need and why it matters to you.
- Listen Actively: Be open to your partner's perspective and willing to find mutual solutions.
- Follow Up: Check in regularly to ensure the changes are effective and sustainable.
I think my biggest hang up with self-advocacy is that I gear myself up beforehand researching, rehearsing the conversation, and planning what I want to say. But then when the other person doesn’t respond positively or puts down my thoughts, I freeze. Something happens in my mind that stops me from responding. I’ll agree to things I don’t really want. I don’t even fully realize I’m doing it either. Afterward I can replay the conversation, notice what happened, and I think of all kinds of things I could have said. I wish I would not have that freeze response and keep strong advocating for myself.
@PiecesOfWhoeverIWasOh your post resonates with me! Yes, that happens far too often doesn't it. I have taken to writing down questions and then handing them to the person. That sometimes works but you are so right, then they will discard my bit of paper and carry on regardless :( I need to work on that tactic. Sometimes taking someone with you helps in these situations, and pushing that they must be allowed to attend with is important too.
All an ongoing pressure I guess? I find some of these tips do help though, and remembering to breathe too!
@MistyMagic reading everyone else's replys, was really sad and opens your eyes to the unfair challenges others face.😥
This is kinda hard for me, because I do rely heavily on other people, like my carers and government. I can't dress, shower, get in and out of bed alone. The carers here at the nursing home are male and female, so boundaries are not exactly something I can put in place. With my lifestyle, I use most social media sites and I have to search things with my carers, can't use the phone, not allowed to use my details. Can't have a bank accoun t, so carers take care of all money, mail goes to a different adress. And I'm just babbling now, I'm I'll stop. Sorry about that
thanks for this thread, thanks for the awarness, gives you a giant tiny hug ❤
@Tinywhisper11 Gives you a magical hug! Tiny, it has been lovely to see you responding to all the other replies, and yes, they are sad, highlighting that there is a need for more care in the medical matters. I hope that this community at 7 Cups will help everyone. Thanks for posting!
@MistyMagic ❤❤🙂❤
I've been advocating for myself my whole life, and it's getting harder and harder to do, as resources and social programs are defunded and ended. I've even had providers use the fact I self-advocate as an excuse to deny services to me, since "you're good at self-advocating, so I'm sure you'll find something elsewhere without us," when I ask for help finding other services.
It's becoming harder and harder to navigate all the barriers and systems. I have almost lost hope and stopped trying. Sometimes, I wish I didn't have to do all of this on my own.
@MistyMagic
Two things from your suggestions I've got positive feedback about:
Ask someone to come take notes. My sisters and I have done this for someone who felt overwhelmed. It meant they could concentrate on the questions they had, and deal with the answers later. It needs to be someone you can trust to respect boundaries though - to understand that they are just there to take notes, not have an opinion or get involved. I think there are organisations that will do this for you.
And joining support groups. There's so much misinformation about, that I think these are really good starting places to find reliable info. However, I have a caveat if you have a progressive disease. I found that the majority of people active in the support group for my condition were those where it had progressed quite far. And constantly reading stories from people in quite bad situations which suggested how bad things might get for me, became unhelpful for me.
@Clio9876 thank you for adding those wise words. You are so right. Sometimes we need to have self-protection in mind too. That is perhaps why 7 Cups works so well, especially the forums and this Disability community too?
I am hoping that we can all work together to help each other in a more unique and kind way.
For anyone that has any ideas or feedback please use this form https://forms.gle/R4Bt4HbnPXNWkXkGA