Ways To Self Advocate Effectively

Effective communication with your doctor and other health professionals is paramount to managing your health. The relationship you build with your health team significantly impacts your well-being. Therefore, the ability to self-advocate is essential and empowering, as it puts you in the driver’s seat of your health journey.

Don’t get me wrong, it can take incredible courage and strength to advocate for yourself, especially when living with Lupus, as to successfully advocate for yourself and your needs, you would have to regularly evaluate your condition and how it directly affects you to play a role in your health care.

When I was first diagnosed with Lupus, my mother, who also had Lupus, would advocate for me, which I believe helped me get my diagnosis quicker than if she had not, as she had had over ten years of advocating for herself, plus, she was naturally more assertive than me. Over the years, I watched her and learnt how to advocate for myself, and when she died in 2018, I had no choice but to self-advocate.

Essential tools To Help You Self-Advocate Effectively

It is natural to have some anxiety that perhaps the doctor won’t listen or take your symptoms seriously or Awkwardness or shyness at having to share personal details about your body, especially if you are newly diagnosed or switching doctors . However, it’s important to remember that your doctor needs to know these details to provide the best care. They are trained professionals who have heard it all before and are there to help you. I know I did and sometimes still do.

Why Do I Need To Self-Advocate?

The ability to self-advocate is a powerful tool that ensures you have everything you need as an expert in your health. Increasing your health literacy through research empowers and gives you the confidence to voice your questions and concerns.

Unfortunately, some health professionals make decisions that affect your life without giving you the complete information. I once had a series of infusions to help get my Lupus under control, and when I went to my follow-up appointment, the doctor asked me if I had experienced any suicidal thoughts or nightmares while I was awake! There were possible side effects of the infusion that I was not told about beforehand. Thank God I didn’t have any of these symptoms, but how traumatic would it be? Imagine if I had a history of mental issues, I dread to think how that could have possibly turned out.

This is just one of the reasons you should read any information about medications and treatments that your doctor suggests and conduct your own research about medications. However, please stick to reliable sources of information on Lupus, especially when on the Internet. Be sure you are accessing reliable content from trustworthy websites, as blogs that relate personal stories may not necessarily have correct medical information.

Suppose you do not speak honestly about how you are feeling and what you need, especially with a condition such as Lupus, when your needs and symptoms are most likely different from someone else who is also suffering from Lupus. In that case, remember, Lupus is often known as ‘the great imitator’ for a reason: it can resemble and mimic a wide range of diseases and conditions, resulting in a wide range of symptoms from inflammation in the skin, joints and blood vessels, a skin rash to neurologic problems. This means that your symptoms may not always fit the typical Lupus profile. Hence, the ability to effectively communicate all your symptoms to your healthcare team so they can develop a treatment plan that you understand and is beneficial to your condition.

Self-advocacy is a testament to your resilience and power and a powerful tool for ensuring you have the support you need.

To aid you in your Self-advocacy journey, here are some tips and questions to help you harness your inner strength effectively. Self-advocate to get the best possible care from your doctor and other health professionals.

Start A Lupus Symptom Diary Today

It is too easy to forget that sudden joint pain you had last month or even when it started, or yesterday’s all-day migraine but the time you go to your next you are in the doctor’s appointment. Plus, that rash on your face may suddenly disappear by your next appointment. That is why a symptom diary can be so important. Please keep track of your symptoms and record any symptoms you notice. It would be helpful to have a dedicated notebook, cute diary, or even the notes function in your phone to help you keep track. This information will help your doctor determine the best way to help you, so be as specific as possible.

You should record the day, time, symptom, and severity at a minimum. You could also keep track of things that affected your health, such as sleep quality, menstrual cycle, or whether you stayed in the sun, as they can all affect Lupus.

Symptoms You Should Record

What was the symptom?
How the symptom felt
Where it hurt
When did it start, and how long did it last?
Anything that made it better or worse.

Bring Someone With You

You may be anxious during your appointments and feel like you are unable to self-advocate, consider asking someone to go with you as they could take notes and remember things you may have forgotten you wanted to say.

Bring A List Of Your Medications

Always bring a list of all your medications. You could also record this information in your health diary.

Ask For A Lupus Specialist If You Go To A&E

If you ever have a flare so bad that you end up at Accident and Emergency, always ask to see a Lupus specialist. I do this every time I go to A&E because when the doctors see my blood results, they are very confused due to the lupus activity, and there is something that keeps presenting itself that makes doctors who are not familiar with Lupus patients think I have a blood clot and on more than one occasion I have been admitted into the hospital or have had to have loads of time-consuming tests.

Speak Up If You Are Unhappy

If you are unsatisfied with the care you have been receiving, ask to speak to the Patient Advice and Liaison Service (PALS). Every hospital should have one.

Write Down Any Questions

In the days before your doctor’s visit, write down any questions you have about your condition, symptoms, medications, what your test results mean, and even tips for managing your symptoms better and what support is available. You can record this information also in your health diary.

Questions You May Consider Asking:

Based on your current diagnosis, are there new symptoms you should look out for?
What is your treatment plan? and what are the possible side effects?
How can you reduce your risk of side effects from this treatment?
What symptoms should I go to the hospital when I require a doctor’s appointment?
What can you do at home to help yourself feel better and prevent lupus flares?
Based on your diagnosis and treatment plan, should you avoid any exercise, foods, or over-the-counter medications, vitamins, or supplements?
Could your condition be related to or triggered by anything else, like medications or allergies?
Are there any medical or healthcare specialists you will need to see?
Are there any alternative medications/treatments that could help you?
Are there any activities, like exercise or yoga, you could do that may help your condition?
Are there any clinical trials for new drugs that may be a good choice for you?
Will any of the medications prescribed for you create an issue if you want to have a baby or get pregnant?

Questions Your Doctor may Ask You:

Have you noticed you get rashes or feel unwell after being out in the sun?
Have you noticed a rash on your face that spreads across your cheeks and nose?
Have you noticed any mouth sores that last a few days or longer?
Have you noticed any swelling and pain in your joints? If so, which ones and how often do they occur?
Have you noticed any pain when you take deep breaths?
Do you sometimes have trouble concentrating or remembering things? If so, how often does this happen? Do you get headaches?
Do you sometimes feel when you are not otherwise sick?
Have you noticed any hair loss?
Do you have dry eyes or mouth?
Have you been sleeping well?
Have you noticed a pattern in your symptoms?
What are my treatment options?
What are the possible side effects of my lupus medications?
How long will I need to take this lupus medication?
Is it safe for me to become pregnant if I have Lupus? Are my lupus medications safe to take while I’m pregnant?
What is my prognosis, and what does the future look like?

Research How To Save Money On Medications

SLE is a lifelong illness which could require several medications to keep under control, which can end up being quite expensive. unfortunately, it is not rare for people, not just those not affected by Lupus, to skip doses or stop altogether because of the expense.

Unfortunately, Lupus is not one of the currently listed on the medical exemption list, so you must pay the full price for prescriptions unless you fit into any of the below criteria’s:

60 +
Under 16
16-18 and in full-time education
Pregnant or had a baby in the last 12 months.
Have a medical exemption certificate.
However, the NHS Prescription Prepayment Certificate (PPC) could save you money. It covers all NHS prescriptions for a set price.

I hope you find the above tips about how to self-advocate helpful and put it into practice.

I’m sure you will be proud that you spoke up to get the necessary tools, resources, and support to self-advocate on order to manage your condition correctly.

Do you have any tips how to self-advocate or do you regularly advocate for someone?

Please comment below, lets help spread Lupus awareness.

Discover more about my journey with Lupus by checking out these insightful posts:

Disclaimer: The information and tips in this post are based on my personal journey with Lupus. They are shared for the specific purpose of educating and informing other Lupus warriors, helping them find their own coping mechanisms.

Please note that this is not medical advice for any specific condition or situation. Wots Her Name Again? should not be used or relied upon to diagnose or treat a problem, disease, or medical condition.

It is crucial to remember that your licensed physician or healthcare professional is the only one who can provide the necessary guidance and address your concerns and questions about Lupus, its diagnosis and treatment. Their expertise is invaluable.

Resources For Navigating Lupus

If you or a loved one is being diagnosed with Lupus and needs further assistance or information, these reliable and trusted resources can provide the help you need.

Lupus UK

Lupus UK is a voluntary organisation in the United Kingdom that plays a crucial role in providing information and support to individuals affected by systemic lupus erythematosus (SLE).

Lupus Trust

The Lupus Trust (previously the St Thomas Lupus Trust) was established to fund vital research into Lupus and provide information on the condition.

Hibbs Lupus Trust

A Personal Journey Turned into a Mission The Hibbs Lupus Trust, a registered charity founded in 2011 by the Hibbs family, was born from a personal journey with Lupus and a strong desire to create meaningful change.

Amari Head Spa: A Transformative Reset for Hair and Mind

The Everyday Glam Marc Jacobs Giveaway Winner

Airplane Mode Travel Set: Effortless Luxury in a 2-Piece Travel Essential

Vintage Designer Bags Under £1000: The Collector’s Edit