Medically reviewed by Dr. Chioma Peters (MB;BS). Last updated 27th September 2026.
Most people mean well when they talk to a friend, coworker, or relative who has sickle cell disease. Still, many common comments sound dismissive, blaming, or scary to the person hearing them. They may hear these remarks at work, at school, at family dinners, and in the emergency room.
Sickle cell disease is an inherited blood condition that causes pain, tiredness, and other health problems. The CDC estimates that it affects about 100,000 people in the United States.
This guide covers 15 phrases to avoid, the reason each one hurts, and a kinder option to use instead. It is written for friends, family, coworkers, and caregivers. People living with the condition are welcome to share it with anyone who needs it.
What Sickle Cell Disease Actually Is
Healthy red blood cells are round and flexible, so they move easily through blood vessels and carry oxygen around the body. In sickle cell disease, a change in the gene that makes hemoglobin, the oxygen-carrying protein in red blood cells, causes many of these cells to become stiff and curved like a crescent.
These cells break down faster than healthy ones, which leads to anemia and fatigue. They can also get stuck in small blood vessels. That blockage causes sudden, severe pain called a pain crisis, and over time it can damage organs. The National Heart, Lung, and Blood Institute explains how symptoms vary from person to person and change over time.
Things Not to Say About Pain and Symptoms
1. You are being dramatic
Pain crises can be severe enough to require hospital treatment with strong pain medicine. Calling that drama tells the person their suffering is exaggerated. Many people with sickle cell have spent years trying to be believed, and they should not have to prove it to you.
Say this instead: I believe you. What can I do right now?
2. You look fine to me
Most symptoms happen inside the body. Looking well says nothing about how much pain or exhaustion someone is carrying. This comment can leave a person feeling they must look sicker to be taken seriously.
Say this instead: Thank you for telling me. How are you really feeling?
3. You are just lazy
Fatigue is a recognized symptom of sickle cell disease. Anemia means the body has fewer healthy red blood cells to carry oxygen, which can cause a tiredness that rest does not always fix. Calling someone lazy ignores the effort it takes just to get through an ordinary day.
Say this instead: Let us go at your pace.
4. Just drink more water and you will be fine
Dehydration can trigger a pain crisis, so drinking enough fluids is a normal part of managing the condition, and most people with sickle cell already know that. But water cannot treat severe pain or replace medical care. Offering it as a fix sounds like the person caused their own pain.
Say this instead: Can I get you some water or anything else that helps?
5. I get pain too, I know how you feel
Comparing sickle cell pain to a headache, a sore back, or a sports injury shrinks the experience. Even when you mean to connect, the comparison shifts the focus from their pain to yours. Listening does more than relating.
Say this instead: I cannot imagine how hard that is. I am here to listen.
Things Not to Say in Hospitals, Clinics, and Emergency Care
6. You just want drugs
This is one of the most damaging myths. National guidelines from the National Heart, Lung, and Blood Institute call for rapid pain relief, including opioid medicine, for severe pain crises. Needing strong pain medicine during a crisis does not mean someone is addicted. Being wrongly suspected of drug seeking can lead to delays, undertreated pain, and a fear of going to the ER at all. If you see this happen to someone, speak up for them.
Say this instead: What does your care team say you need? How can I help you speak up?
7. Do you really need to go to the hospital again
Frequent hospital visits are exhausting, and no one enjoys them. This comment can push people to delay urgent care, and waiting can turn a manageable crisis into a serious one. Fever, chest pain, or trouble breathing should never be put off.
Say this instead: Do you want me to drive you or come with you?
8. What did you do to cause this
Common triggers include dehydration, cold temperatures, infections, and stress. These are not always avoidable, and sometimes a crisis has no clear trigger at all. Asking what someone did wrong adds guilt to pain that is already heavy.
Say this instead: Is there anything I can do to make today easier?
Things Not to Say About Life, Health, and the Future
9. You could die at any time
Sickle cell disease can cause serious complications, and the person living with it knows that better than anyone. Saying it aloud is frightening and adds nothing useful. It also overlooks how much treatment has changed.
Hydroxyurea, a daily medicine, has been shown to reduce painful events for many patients, and regular specialist care helps prevent complications. In December 2023, the FDA approved the first gene therapies for sickle cell disease for patients 12 and older. These treatments are intensive and carry risks, so they are not right for everyone, but they show how fast research is moving.
Say this instead: I am with you, whatever comes.
10. You should not have children
Whether to have children is a private decision that belongs to the person and their partner. Genetic counseling can explain the odds and the options, but the choice is theirs. Unrequested opinions can feel like a judgment on their worth.
Say this instead: Share only what you want to. I will support your choices.
11. Everything happens for a reason
This phrase is meant to comfort, but it often lands as a way to skip past real suffering. Pain that has no purpose deserves to be acknowledged, not explained away.
Say this instead: This is unfair, and I am sorry you are dealing with it.
12. Can you not just push through
Overexertion and exhaustion are known crisis triggers, and pain that needs treatment should not be ignored. Rest is part of managing this condition, and it is not a sign of weakness. Pressure to keep going can lead people to hide symptoms until they become an emergency.
Say this instead: Rest is fine. Your health comes first.
Things Not to Say Based on Myths
13. Can I catch it from you
Sickle cell disease is not contagious. It is inherited, which means a child is born with it after receiving a sickle cell gene from one parent and another altered hemoglobin gene, most often a second sickle cell gene, from the other.
You cannot get sickle cell it by hugging, kissing, sharing food, or being in the same room. Asking out of fear can make a person feel like a danger to others. If you are curious, wait until they show they are comfortable sharing.
Say this instead: Would you like to tell me how this condition works for you?
14. Only Black people get sickle cell
The CDC reports that about 1 in 365 Black or African American babies in the U.S. is born with sickle cell disease, and more than 90 percent of Americans with the condition are Black. It also affects other groups.
About 1 in 16,300 Hispanic American babies is born with it, and it is found in families from the Middle East, the Mediterranean, and South Asia. Assuming someone cannot have it because of how they look can delay diagnosis. Assuming they must have it can be just as unfair.
Say this instead: Thanks for teaching me. What should I know?
15. You always cancel on us
Symptoms can change from day to day and come without warning. Canceling plans is rarely a choice, and each time it happens the person may already feel guilty. Repeating that they let people down piles on shame.
Say this instead: No pressure. Tell me when you feel up to it.
Also read: What not to say to a parent of a child with sickle cell.
What to Say When Someone Is in a Pain Crisis
Words matter most in the middle of a crisis. Keep them short, calm, and focused on the person.
Kind phrases that help
- I am here. Tell me what you need.
- Do you want me to call your doctor or take you to the ER?
- Would a heat pack, a blanket, or water help?
- Take your time. There is no rush.
- I will handle the rest. You focus on getting through this.
Practical things to do
Offer a ride, keep the room quiet and warm, and bring water. Help with small tasks such as calling work, feeding a pet, or watching kids. If the person has a care plan from their doctor, follow it. Heat, such as a warm bath or heating pad, helps many people, while ice and cold packs are generally not recommended because cold can make pain worse. Always let the person tell you what works for them.
When to call for help
Some symptoms need urgent medical care. The National Heart, Lung, and Blood Institute advises seeking emergency care or calling 911 for severe pain, and CDC guidance lists these signs as reasons to go to the ER right away:
- Fever above 101 degrees Fahrenheit, which can signal a serious infection
- Chest pain or trouble breathing
- Sudden weakness, numbness, confusion, or trouble speaking
- Severe headache or seizure
- Swelling of the belly
- Sudden vision problems
- Pain that does not ease with the person’s usual treatment
When you call 911 or arrive at the ER, tell staff the person has sickle cell disease.
Words and Labels: What to Call Someone With Sickle Cell
Language is personal, so follow the person’s lead. Some people proudly call themselves sickle cell warriors and find strength in the term. Others feel it puts pressure on them to stay strong at all times, even on days they are struggling.
Sickler is a word some folks in the community use for themselves, but it can sound insulting from outsiders, so avoid it unless the person uses it first.
A safe default is person with sickle cell disease. It puts the person first and the condition second.
Frequently Asked Questions
Can you kiss someone with sickle cell?
Yes. Sickle cell disease is inherited and cannot be spread through kissing, touching, sharing drinks, or any other contact. It is not an infection.
What should a person with sickle cell avoid?
Triggers vary from person to person. Common ones include dehydration, extreme heat or cold, sudden temperature changes, high altitude, infections, stress, and exhaustion. Smoking and secondhand smoke are also discouraged because they can harm the lungs. A doctor can build a personal plan.
What makes sickle cell worse?
Illness, dehydration, low oxygen, stress, cold temperatures, and overexertion can all set off a pain crisis. Over time, missing regular checkups or prescribed medicine can raise the risk of complications.
Can sickle cells go back to normal?
The answer is not one. Treatments such as hydroxyurea can reduce sickling and complications. Stem cell transplant and the gene therapies approved by the FDA in 2023 are potentially curative for some patients. Many also report cases of miraculous healing.
How can I support a friend with sickle cell?
Believe them, ask what helps, and offer specific help such as rides, meals, or company at appointments. Be flexible with plans and keep their health details private. Learning the basics yourself saves them from explaining everything again.
Where to Find Support and Trusted Information
Reliable sources help you learn more and support someone well:
- CDC sickle cell resources for facts, data, and health guidance
- National Heart, Lung, and Blood Institute for symptoms, treatment, and research information
- FDA news on sickle cell gene therapies for details on newer treatments
- Sickle Cell Disease Association of America for community programs, local chapters, and advocacy
This article is for general information and does not replace medical advice. A doctor or hematologist can answer questions about a specific case.
Final Thoughts
Nobody expects perfect words. What helps most is belief, patience, and showing up. If you are unsure what to say, listen first, then ask how you can help.
Save the say this instead list, share it with people who need it, and keep learning. Small changes in how we talk can make everyday life and hospital visits easier for people living with sickle cell.
